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Aaron Boster

Ask Aaron – your opportunity to speak to a Neurologist

Neurologist, Dr Aaron Boster, is back for a special extended session to answer questions from the community about living well with MS.

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Webinar summary:

In this webinar, Overcoming MS community members Regina Beach and Zoe Johnson talks to Dr Aaron Boster, a widely published, board-certified Neurologist, asking him the community’s questions about living well with MS.

Key highlights:

2:02 MS treatment with Dr Aaron Boster.

05:10 Monitoring MS with a focus on MRI and lived experience.

6:56 MS diagnosis and MRI frequency.

13:25 HSCT for treating aggressive autoimmune conditions. 

15:15 MS treatments and cannabis use.

22:39 Vitamin D, sun exposure and MS treatments.

29:48 MS hug symptoms and their relation to heart disease.

32:48 MS treatment and diet.

42:27 Menopause and MS, hormone replacement therapy and stress management. 

48:21 MS management, medication and fertility. 

55:21 DMT options for JCV-positive patients.

57:31 MS symptoms and treatment options.

01:03:02 MS treatment and prognosis with a focus on physical activity and diet.

01:12:57 MS risk factors and treatment options for children of parents with MS.

01:18:26 A colour-coded prognosis for MS patients.

01:27:29 Mental health and MS

 

Speaker bios:

Dr Aaron Boster

Dr Aaron Boster is award-winning, widely published, and board-certified neurologist specialising in multiple sclerosis (MS) and related CNS inflammatory disorders. Witnessing his uncle’s diagnosis with MS when he was 12, he and his family came to see a lack of coherence in the way MS was treated at the time. That experience informed Dr Boster’s drive to do things differently.

Dr Boster has been intimately involved in the care of people impacted by MS; he has been a principal investigator in numerous clinical trials, trained multiple MS doctors and nurse practitioners, and has been published extensively in medical journals. He lectures to both patients and providers worldwide with a mission to educate, energise and empower people impacted by MS.

Regina Beach

Regina “Gina” Beach is the producer of the Living Well with MS podcast as well as one of the Ambassadors for the Overcoming MS Circle in Wales. She was diagnosed with Relapsing-Remitting MS with incomplete remission in 2021 and has been following the Overcoming MS Program ever since.

Gina teaches virtual accessible yoga and meditation and runs retreats in the UK and abroad.

Zoe Johnson

Zoe joined Overcoming MS in September 2022 and is now a Digital Projects Manager. She has a background of over 10 years’ experience in various digital optimisation roles, across a number of industries.

Read the episode transcript here.

This transcript was created with the support of a volunteer.

Regina Beach 02:02
Hello, and welcome back to the Finding Hope with OMS webinars series season four. We are so pleased to bring you tonight’s session with Dr. Aaron Boster, who is an award winning neurologist from the Boster Center for MS in my own home state of Ohio. If we haven’t met my name is Gina Beach. I am an OMSer myself I live with relapsing remitting MS. And I’m joining you from South
Wales. And in a moment, I’ll be welcoming both Aaron and my colleague and fellow OMSer Zoe Johnston to the stage. But before I do that, I just want to run through a bit of housekeeping to help keep the webinar running as smoothly as possible. Greetings to all of you watching this on replay in the future. But if you are joining us live, please note that we are recording and you will receive a link
to access this recording within the next week. So check your inboxes for that. And as this is a Zoom webinar, there’s no audio or video component for the live participants. However, this is definitely an interactive session, you will be able to ask a question. Using that Q&A tab you see on your screen. We will start with all of our pre submitted questions. But if you have not already submitted your question, it’s not too late. Please do that now. And just remember if you are submitting questions to keep them generic so that we can all benefit from the answer. Unfortunately, Dr. Boster is not able to comment on individual circumstances or diagnoses. If you are experiencing any technical glitches today, try leaving the webinar and re entering using the link on your email. And for best results we recommend using an up to date Chrome browser to access the webinar today. We’ve tried to make this season as accessible as possible and today’s webinar uses closed captioning, you can toggle the subtitles on and off by clicking the CC live transcript button at the bottom of your screen and select either show subtitles or hide subtitles. As you exit the webinar today, there will be a short survey that pops up automatically. A lot of people might not even realize it’s a survey and X out of it. But try not
to do that. I know I’m guilty of doing that before. It’s really helpful to receive your feedback. So if you have a moment please fill it in. This webinar will run for approximately 90 minutes. Please remember that neither Zoe nor I are medical experts and so you’ll have to forgive us if we struggle with any pronunciation trust that we are doing our best. And now without further ado, I’d like to welcome Dr. Aaron Boster and my colleagues Zoe to the stage.

Dr. Aaron Boster 05:10
Howdy. Hello. Hi everyone, how are you? Wonderful. I’m really excited to be here. Hello, everybody.

Zoe Johnston 05:19
Great. Thanks so much for that great intro. Gina. I know we’ve got 90 minutes, but we do have loads of great questions. So I think if you guys are ready, we’ll just jump straight into the questions. Is that all right, Aaron?

Dr. Aaron Boster 05:29
Let’s do it.

Zoe Johnston 05:30
Alright. Great. Yeah, I’ve got the first three. So the first question this person has asked, I have secondary progressive MS. And it’s been a while since my annual MRI included C spine or T spine. I have no relapses, but I am slowly progressing. Do these MRIs need contrast to be a value?

Dr. Aaron Boster 05:52
So that’s a great question. And if we take two steps back, really what we’re talking about is, how does one monitor multiple sclerosis? How do you assess how somebody is doing with MS. And there are really three ways that come to mind. When you’re assessing multiple sclerosis. The most important is not the MRI. The most important is not the neuro exam, the most important is the lived experience of the human being who is a them expert. So so you know more about you than any MRI or any neurological test, and sharing with the clinician team that’s involved in your care what’s been going on whether or not God forbid, you’ve had disease activity, whether or not things are becoming harder for you, whether you’re failing the litmus test to life is hands down the most important thing, but that’s not the only thing that we do to monitor someone. We can run them through the MS Olympics, you know, with all the testing and the watching the finger all the neurological examinations and testing. And a second way that we can also assess them is with the MRI, which is really the question. So I think getting an MRI about once a year is a reasonable request. Here in the United States where I practice medicine, I can get an MRI of your brain annually through most insurance products without any difficulties with an MS diagnosis. And the MRI of the spine because they asked about cervical and thoracic spine is not something that I do annually. I do it about every other year. Now interestingly, the consortium of MS centers here in the US recommends only repeating the spine if there are new symptoms attributable to the spine. Because it’s very hard to have new neurological symptoms involving the spinal cord without it manifesting clinically. That stated, I think it’s a best practice to get a spine every once in a while. And there’s a couple of reasons. You can have lesions that go unnoticed on exam that has happened. Lesions can get bigger. And there’s other bad things that can happen in the human being spine that we might want to just check on like a slip disc or a degenerative disc or something like that. As far as contrast is concerned, is it required? No. Is it helpful? Yeah. So if we give an MRI without contrast, it is still a very, very useful tool. And I would submit to you that we learn 85-90% Of all the information we want to learn without contrast. If you give contrast, it allows us to see the timing of a lesion, whether it’s a new lesion, now, it’s falling out of favor giving contrast because of the risk to your kidneys. And concerns about sequestration in the brain. Where I land on this is if the patient doesn’t have any kidney problems, and they’re comfortable, I would prefer to do it with contrast. But if there’s any reasons not to or if the patient’s uncomfortable, then I just leave it out. Great question. Thank you.

Zoe Johnston 08:45
Yeah, and great answer as well. I think that’s really thorough. Thank you. And you’ve covered this question a bit already. But just to double check, someone’s asked, How often is it necessary to have an MRI? So you mentioned annually, and possibly every other year, including the spine? I know, it’s been a while since my last MRI. So I’m interested in this question as well.

Dr. Aaron Boster 09:03
So I’ll tell you what, I don’t need an MRI. I don’t need an MRI if you have an MS attack. I don’t need an MRI if you have an MS attack, because I already know what’s wrong because you’re telling me right? So I think it’s a little bit odd when a neurologist will get a scan to confirm an MS attack because I don’t need that, I have the human. I want to get an MRI, particularly when everything is dandy like candy when there’s no problems, because I want to look under the hood, so to speak. Now, a human is not a car, it’s just an expression. But when everything’s going well I want to make sure that we’re not missing anything subclinical. And so I think as you point out, getting a scan of the brain about once a year is a best practice in my opinion, and getting a scan of the spinal cord every
couple of years is a good idea.

Zoe Johnston 09:49
Okay, brilliant. Thank you. So the next question from me and this person has asked could you advise whether nerve impulses can learn to take alternative paths if I carry out consistent exercises to move and use areas affected with MS, for example.

Dr. Aaron Boster 10:06
Yeah, yeah. Now it might not be adequate to regain complete function. But yes, you can, particularly in the brain and spinal cord you can rewire. And that’s because of something called neuroplasticity. And really one of the goals of neuro physical therapy is to help reinforce existing pathways and to create new ones so that we can be more functional.

Zoe Johnston 10:30
Absolutely. Yeah, I think that’s a great question as well. And so I’m gonna hand over to Gina, she’s gonna pop back on and she’s going to ask the next couple of questions.

Regina Beach 10:40
Great, thanks. So, this question says, I have followed Overcoming MS for years and have been relatively stable with no relapses until this past January ’23. This relapse was caused by a urinary tract infection. Is there anything I should be doing to avoid UTIs?

Dr. Aaron Boster 10:59
That’s a great question. Um, infections are hard to avoid, right, like the human experience, like people get infections every once in a while. And in the setting of an infection, it can cause what’s called a pseudo attack, meaning it’s not a new inflammatory problem, but the infection is causing the immune system to rev up and the temperature to rev up. And it causes short circuiting of old
damage. And in a pseudo attack, we don’t give steroids we just give antibiotics to treat the infection. However, sometimes an infection and this is an example can actually trigger an MS attack. And so doing things to avoid infection is very smart. So what can we do to avoid urinary tract infections? Number one, we can increase our water intake. Now, many people with bladder problems assume the opposite. They think if I shy away from water, that’s better. But it turns out to be not the case. If you dehydrate yourself, you still make urine, you just make super concentrated urine, which is a great environment for bacteria to live. If you are a good water drinker, and you’re drinking 100 to 120 ounces of water each day, then you’re constantly filling and constantly flushing your bladder, it’s a very dilute urine, which is very hard for bacteria to live in. And it’s constantly flushing the bacteria out of the walls of the bladder into the toilet. And so honestly, increasing your water intake is one of the very best ways to do that. Another thing to do is to pay attention to coitus. So if we’re fortunate enough to have sex, there’s a lot of friction, there’s a lot of bacteria that could be introduced into the urethra. And so pre and post coital bathing is a really good idea. And I recommend that a lot of people take a shower after they have an opportunity to have sex just to clean up their body and to help minimize that. Now, some people they have a post-coital urinary tract infection, like every single time. And so in those instances, we may actually give them an antibiotic to take after they have sex. So really, there’s lots of different ways of being very serious about it. There are other things we can do like acidifying the urine, like with cranberry extracts or other there’s actually all kinds of over the counters that can acidify the urine and make it a more intense, difficult place for bacteria to live.

Regina Beach 13:22
Great, very thorough, and I know I’m guilty of not drinking enough water. So thank you for that reminder. What are your thoughts on HSCT stem cell transplants for highly active MS? When would you recommend that?

Dr. Aaron Boster 13:37
So HSCT stands for hematopoietic stem cell transplant, and it’s not a medicine. It’s a procedure. It’s a procedure which has been utilized to treat cancer for a long time. And increasingly, it’s now being used largely in the research setting to treat aggressive autoimmune conditions like multiple sclerosis. So just to briefly go over what HSCT is. First, we harvest stem cells. So these are immune cells that are not differentiated. They’re like college freshmen. They don’t know what they’re going to do when they grow up, alright. And we give medicines and we literally extract them out of the body and we put them on ice. Then we kill the human being we give lethal doses of chemotherapy, which ablate the immune system, that’s Dr talk for destroy permanently the immune system, we wipe out the bone marrow. Now if you stop there, the person would die of infection, which is pretty scary. But before they die of infection, you give them back those immune cells, the stem cells, and they recreate a new immune response, which is more well behaved. Now interestingly, the benefit to MS is not the stem cells, it’s the ablation of the immune system, the stem cells just keep you alive, right. And in the United States, where I practice, it’s still considered to be research. So in the United States, we
can’t just prescribe a stem cell transplant to be covered by an insurance carrier. Here in the US, it can only be done in the context of of a clinical trial. In the UK, where maybe some of you have have joined us from today, it is part of NHS, then if you have severe MS. It’s an option which can be available. I would submit to you that it’s amongst the most effective options that are currently available. And if someone had very severe multiple sclerosis, I would consider a a stem cell transplant, or Alemtuzumab or Lemtrada. I think that they’re both extremely potent. They have different side effect profiles, and there’s a lot to unpack. I think that in the United States where I practice, probably in the next five to 10 years, stem cell transplantation will be approved by the FDA as an option for very severe disease.

Regina Beach 15:55
Nice, yeah, I know that’s a hot topic. Lots of people are talking about it and thinking about it right now. Do you have any particularly good therapies, suggestions for someone with a hand tremor?

Dr. Aaron Boster 16:06
Yes. So tremors are super frustrating. I mean, it’s really really annoying. You know, we use our hands for everything and so if you have a tremor not only is an unsightly, but you can knock over your coffee. I mean, you know, there’s all kinds of things about it that are bad. So for starters, it’s probably very valuable to see an occupational therapist or depending on where you live a physical therapist. These are wizards that wear scrubs and they can help us deduce, what kind of tremor we’re dealing with. Because in MS of course, you can have lots of different kinds of tremors for different reasons. And they can potentially either a give you exercises to improve the tremor or improve the hand function or be an adaptive measure. Then I’ll give you an example of an adaptive measure.
They make bracelets that are very heavy, like they’re weighted bracelets. So they look just like jewelry, except they’re two pounds. And if your arm is tremoring and you didn’t you push down on it, you can dampen the amplitude of the tremor. There’s also other devices that are very creative, like these special spoons that you can purchase. And I’ll use this pen as an analogy. And when the
person moves, the spoon moves the opposite direction, keeping the spoon straight so that someone can have soup despite a very substantial tremor. There are medicines that can be used for tremors but quite honestly, they don’t work very well. And a lot of them have side effects of sedation. And so, bluntly, I have not had tremendous success treating tremors with medicines. Lastly, for severe tremors, there is actually a neurosurgical procedure called deep brain stimulation, which can help with tremors and MS. It’s tough in MS to use deep brain stimulation, but I have done it a handful of times with success. But for starters, we’re going to go to the friendly neighborhood occupational therapist and start there and see what we can do.

Regina Beach 18:04
Wonderful. Yeah, it certainly takes a team doesn’t it? There’s lots of lots and lots of therapists that can help.

Dr. Aaron Boster 18:11
It takes a village and that’s what we want is we want to bring all the villagers to bear so that we can live our best life despite having this condition.

Regina Beach 18:18
Yeah, for for sure. Alright, that’s it for me for now. I’m going to bring Zoe back on for the next group.

Zoe Johnston 18:27
Thanks, Gina. Right. So our next question is from someone who has asked: I haven’t taken any DMD since being diagnosed with MS at the age of 17. Is it too late to start?

Dr. Aaron Boster 18:40
No, it’s not. It’s not too late to start. So these medicines are not just for young people. Okay, they’re not just for newly diagnosed people. These medicines are to decrease the frequency of MS attacks, hopefully stop MS attacks, they are to stop new MRI lesions. And I like to be blunt with my language and MRI lesions brain damage, so we’re preventing brain damage. But the medicines do more than those two things. They also slow brain volume loss. So the accelerated shrinkage of the brain, which we can unfortunately see with untreated MS. And they help with slowing disability progression, which is very important. And so I do not think that if you have been not treated for a period of time that ship has sailed. I think that it is completely reasonable particularly because as we age with MS, we have an increased risk of brain volume loss and we have an increased risk of progression of disability. And so taking a medicine to slow that down I think is a great idea.

Zoe Johnston 19:43
Right? So it’s never too late to start.

Dr. Aaron Boster 19:45
Correct.

Zoe Johnston 19:47
Thank you. Next question is What is your opinion on using CBD or THC pills versus edibles, for pain and for sleep?

Dr. Aaron Boster 19:57
So when you’re talking about cannabinoid is so cannabinoids are things like THC and CBD derived from like the cannabis plant, there’s different routes that we can get it in our body different ways of administrating it, right. And what we want to avoid is lighting it on fire and sucking in the smoke, like smoking a joint or a blunt because it’s extremely pro inflammatory for the lungs and also for
the blood vessels and for the brain, and it’s not very healthy option. And so there’s other ways of consuming cannabis. Now the question here is a cannabis pill versus a cannabis edible. And to me, that’s the same thing. When you consume cannabis by edible, there’s one step which is necessary, which is to decarboxylated you need to make it biologically active. So if you took a cannabis bud
and just ate it, it wouldn’t actually help you very much. You have to either heat it up or you have to pressurize it to decarboxylated. And so we presume that the edible which has been cooked in say, a cookie or something else, a brownie, or the the pill, which has been manufactured has been decarboxylated. And in which case, they should both work just about the same. I think whatever you
do, knowing the amount that you’re ingesting, and knowing and keeping notes about the response is the only way to really consistently figure out what works for you and what doesn’t work for you. So by keeping notes, then you can go back and check and figure out hey, I respond best to XYZ.

Zoe Johnston 21:34
That’s a great tip. And I think with a lot of things like symptoms and things like that actually keeping notes really helps you keep track and understand your body and you know, the impacts different things have a lot more so. Great tip. The next question is about FES. So that’s functional electrical stimulation for those that don’t know, can that equipment be beneficial for MS, at least for muscle muscle strengthening in patients confined to their bed?

Dr. Aaron Boster 22:03
Yes. Yeah, it would be. So EStem is a great tool. And I think combining EStem with physical therapy measures is a very, very reasonable thing to consider. It needs to be done in conjunction with physical therapy, and the most often is, but I think it’s a great idea for someone who otherwise isn’t able to hop out of the bed and participate in other ways.

Zoe Johnston 22:28
Right. Thank you. Gina, if she wants to pop back on Gina’s got the next set of questions. How are you doing Aaron?

Dr. Aaron Boster 22:35
Dandy like candy. Thank you.

Zoe Johnston 22:37
Perfect, great.

Regina Beach 22:39
Wonderful. All right. This is a two part-er on vitamin D. So what’s your opinion on how much vitamin D for MS? And can patients have too much vitamin D? Is there an upper threshold that we should be aware of?

Dr. Aaron Boster 22:51
Yes. So when you review the copious data on vitamin D, there’s very, very clear associations with low levels being associated with worse outcomes, and high levels being associated with better outcomes. Now, interestingly, there’s not any causal proof that taking vitamin D helps, but I am of the strong opinion that it’s worthwhile to take. So I’m just kind of being honest about the data. So I recommend that all of my patients supplement vitamin D. I’m a big believer in that. And that’s consistent with a lot of the OMS tenants, I will share, there’s a couple of ways to get vitamin D. So the best way to get vitamin D is to go outside naked. Alright, so if you go out in full sun in a halter top, so the police don’t call and you’re in full sun for 15 minutes, you will absorb 5000 international units of D3, which is generally the dose that I recommend people get. And that’s a very free way to do it. Now, the problem is where I practice medicine in the state of Ohio, for several months out of the year, you would freeze to death. If you did that, then you know it really like you would you would have frostbite in terrible places. So that’s not the best option all year round. Another way to get vitamin D naturally is by eating egg yolks or really fatty fish. But the problem is that the amount of fish that you would have to consume is near impossible. So you would literally be eating an entire salmon, like the whole fish to try to get that much because a piece of salmon like a three and a half ounce portion, which is a standard dinner portion is 600 international units and we need around 5000 minimum. So it would be very challenging. So we default to taking a vitamin D3 pill. And I recommend D3 because D3 is what your body makes with the sun reaction and it’s the more bio available form. So what dose do I want? I don’t want a dose I want a blood level and I want the blood level. The test that I order is called a vitamin D 25 hydroxy level. It’s a standard laboratory test. And I want the level between 50 and 100 ng/mL. That’s the range that I want it in. Can someone overdose on vitamin D? Yes, they can. And so if it goes above 100, that’s not a good idea. And generally speaking in the Midwestern United States where I practice, Vitamin D is very, very low. And we oftentimes give people 5000 international units daily, or 50,000, international units weekly, but then we check levels and adjust accordingly.

Regina Beach 25:35
Right, yeah, I just upped my vitamin D, because here in the northern hemisphere, I live in Wales. And I know that I’m not going to get any natural sunlight for the next, you know, six months or so. A tag on question to the vitamin D, does wearing sunscreen change the impact of the sunlight on your skin? And how should we manage that risk of cancer versus upping our vitamin D levels?

Dr. Aaron Boster 25:58
So honestly, I don’t know the answer. So I’m not sure although I assume that sunscreen would block the vitamin D reaction, but I don’t actually know that. I do think that we have to be cautious about sun exposure, right, because there is a risk of cancer. And I think that sometimes at least Ohioans default to just hide, right. And so getting a little bit of sun, once a day is probably not going to
be abominable. All adult humans should see a dermatologist once a year, I call that the nakey doctor, and then make the doctor should look you over head to toe and make sure that all the moles look great. But the reason I bring this up is there’s some growing evidence that it might not be just the vitamin D that helps us there may be value in the sun itself. So I asked patients to do both.

Regina Beach 26:50
Yeah, I know that the Overcoming MS program recommends 15 minutes of sun exposure, you’re not going to get burned, but you’re still get some good sunshine and then you know, cover up.

Dr. Aaron Boster 27:03
Exactly.

Regina Beach 27:04
So alright, switching gears a little bit this question asker found out that Ocrevus wipes out the Epstein Barr Virus as it targets B cells and wants to know your opinion on that. I have not heard that at all.

Dr. Aaron Boster 27:18

No that’s not correct.

Regina Beach 27:19
Okay, so that’s false information. Ocrevus doesn’t wipe out epstein barr, but it does target B cells, correct?

Dr. Aaron Boster 27:26
That’s true. Okay.

Regina Beach 27:28
And then second part, what is your feeling on a treatment like Ocrevus versus a stem cell transplant when comparing the effectiveness to the side effects.

Dr. Aaron Boster 27:38
So a stem cell transplant is not magic, it does not cure the disease. And it’s morbid, it can kill you. So, it’s not even in the same realm as as a disease modifying therapy, I’m gonna go with ocrevus 9.9 times out of 10 over a stem cell transplant, because Ocrevus is a highly effective disease modifying therapy. And it doesn’t have nearly the side effect profile of a stem cell transplant. In my mind,
they’re not even in the same discussion. So the person in whom I’m considering a stem cell transplant is not someone that I’m going to be thinking about Ocrevus just because they’re going to be absolutely profoundly aggressive with attack after attack after attack, hospitalization after hospital. It’s very, very different scenario.

Regina Beach 28:33
Right, thank you. And I know I’ve heard you answer this before. But should I worry about having children if I have MS?

Dr. Aaron Boster 28:41
So I want you to decide about having a family completely independent from MS. 100% independent. If you are desirous of having a family than by gosh, you have a family, if you don’t want to have kids don’t, but I never ever, ever want MS to make that decision for you. Now, a couple of facts to back that up. The likelihood that you pass on MS to your children is extremely low. And there are
things we can do to even further lower their risk by making sure that your future children are not morbidly obese, they’re not inactive, that they have exposure to the sun and supplement vitamin D. They’re not exposed to secondhand smoke. So those are all things that can decrease a child’s risk to develop MS. Also, having a baby does not make MS worse. And having MS doesn’t make
carrying a child worse, it doesn’t increase risk of birth defects. It doesn’t increase risk of abortions, it doesn’t increase risk of any complications. And so I want you to decide about family planning separate from your MS. And I don’t want MS to have a say in the discussion.

Regina Beach 29:48
It’s really reassuring and really helpful. Thanks, Doctor Boster. All right, back to Zoe for the next few.

Zoe Johnston 29:54
Yeah, thank you. I love that advice. Yeah, make that decision independently of your MS. Absolutely. Yeah, I think that sounds like solid advice. So the next question is, is the MS hug related to heart disease? So for those that aren’t aware of the symptom, the MS hug is a symptom of MS, where the person might experience a pain or a tightness in their chest or around their stomach. So is that
related to heart disease at all in as far as you know?

Dr. Aaron Boster 30:21
Let’s back up, human beings don’t come with manuals, like where you can look up on page 38. What is this sensation I’m experiencing? Like, that doesn’t exist, right? So so when someone has crushing chest pain, we have to assume that it’s their heart or lungs, because to not assume it’s their heart or lungs, they could die, right? But in the setting of MS. Someone can have crushing chest pain, which has nothing to do with their heart or lungs. Now, the very first time it happens, unfortunately, they’re probably going to need to present to the emergency department, God forbid, it’s a heart problem. But what ends up happening in the setting of an MS hug is the heart checks out fine, the lungs check out fine and the doctor saying and you’re still feeling like you’re being squeezed. So the MS hug is a diagnosis of exclusion. It’s when you exclude the other scary words that we’re left with, ah, maybe this is an MS hug. So what is the MS hug when you when you have occasion to eat ribs, like in the United States, like ribs are very popular, right? So there’s a bone and there’s meat and then there’s another bone. The meat between the ribs sorry to be gross are the intercostal muscles and humans have the same muscles. And those muscles are controlled by the spinal cord. In the setting of hug, the spinal cord sends a bad message for the muscles to contract. So the muscles between the ribs contract, and literally you are being squeezed by your own muscles. And it oftentimes feels like your bra’s on three times too tight or there’s a lasso wrapped around your belly, or you’re being hugged by a bear something very unpleasant. The good news is MS hug is treatable. So there’s lots of medicines that can successfully treat MS hug. It has nothing to do with your heart. But again, we have to first exclude the scary stuff. I don’t want someone listening to this to later have an MS hug or think it’s an MS hug and stay at home. And then God forbid, you know, have a heart attack.

Zoe Johnston 32:26
Yeah, definitely. Yeah. So first time, you might experience it, definitely get immediate kind of help and advice. But yeah, okay, great to know, it’s not linked to heart disease very useful, and I didn’t know exactly how it works. So that’s really helpful, I’m sure, lots of people to know. So the next person has asked them at my last MRI, my doctor told me I have no active lesions. However, I have also been diagnosed with graves autoimmune disease, which is an autoimmune condition that affects the thyroid. For those who aren’t aware, will taking DMDs help with that?

Dr. Aaron Boster 33:01
So taking an MS disease modifying therapy is unlikely to help with Graves disease. At the risk of being a weirdo, depending on the kind of disease modifying therapy used, it’s possible there could be some overlap, but not with the FDA approved therapies. Typically, when we treat autoimmune thyroid, we’re doing some different things. And so we would take the MS disease modifying
therapy to slow the multiple sclerosis, and then we may need separate treatment to treat the underlying Graves disease or thyroid.

Zoe Johnston 33:33
Okay, great. Thank you. And the next question, apologies in advance if I pronounce this incorrectly, do you think that piriformis syndrome is related to MS versus spasticity?

Dr. Aaron Boster 33:45
So the piriformis muscle is a muscle down there. And it’s typically just in front of the anus, right? Just behind the genitalia. So it’s in that region. And if it spasms, it hurts like the dickens. You can just imagine if you have a spasm down there that can drop a man or a woman. Now piriformis syndrome is something that you can see with MS spasticity, and fortunately, it’s treatable. So you can
stretch it. You can Botox it, and one of the most powerful tools to help with piriformis syndrome is something called pelvic floor physical therapy, which sounds like what it is where a pelvic floor PT gets up in your business and can teach you how to strengthen and stretch those muscles including the piriformis muscle.

Zoe Johnston 34:39
Thank you. Handing over to Gina the next set of questions. Great.

Regina Beach 34:46
If someone with MS was not breastfed as an infant, could that be the reason their immune system is low?

Dr. Aaron Boster 34:53
So I don’t think that lack of breastfeeding by itself would be be adequate to cause multiple sclerosis. However, when we study large groups of people, there is a slight increase risk of MS amongst people that were not breastfed. Now, does that mean you should be mad at your mom? No, not at all. But, again, we’re looking at epidemiologic data. So there is probably a host of things that must occur in order for someone ultimately to develop MS in not being breastfed might contribute a little bit, but I do mean a little bit.

Regina Beach 35:33
Yeah, that’s good. It’s not the main thing.

Dr. Aaron Boster 35:39
That’s exactly.

Regina Beach 35:42
Alright, this is a fun one. What three foods would you eliminate from someone with MS’s diet? And what three things would you add to someone with MS’s diet?

Dr. Aaron Boster 35:52
That is a fun questions, whoever asked that good job. Okay, so what three things would I remove from the diet, I would remove all processed foods. So that’s any food that has high fructose corn syrup, any food that has chemicals that you can’t pronounce, because if you are an adult, human, you’ve heard all the food words. Alright, so if you have a word and you can’t pronounce it, that’s
not a food. So processed foods will be number one on my list. Second, would be sugary foods. So I would remove all sugar laden foods. So I’m not trying to be a Debbie Downer. But I think that sugar is a poison. And it does a lot of terrible things to our nervous system, and a lot of terrible things to energy levels, and thinking and memory, etc. And number three, I would remove all diet foods.
So diet, soda, diet, Instant Breakfast diet Little Debbie shortcakes. That’s what I so those are the three things that I would remove, what would I add? Number one hands down unequivocally, I would add water. So I would up the water game, we want men and women with MS to really do a good job of drinking water. 100 ounces for a gal and 120 ounces for a guy is a lot of water. But that
would be number one. Number two would be fiber. So most Americans, a standard American diet is almost completely devoid of fiber, all fast food has fiber removed from it, because it cooks faster. But fiber is a very important, insoluble aspect of nutrition. It helps feed the microbiome in our guts, and it helps us not be so constipated. There’s a lot of things that are important about fiber.
So I would add that in. And then what would be my number three that I would add, I would probably add in more vegetables. So most, most folks are pretty bad at eating adequate veg, and including vegetables and fruits of different colors is a really, really smart idea. And there’s like 100 reasons why but those will be the three things that I would add.

Regina Beach 38:05
Yeah, wonderful. There’s, you know, 20,000 edible plants and you say like, eat the rainbow or. It’s good advice. Wonderful. What is it about MS that causes heat sensitivity, brain fog and poor balance?

Dr. Aaron Boster 38:21
So that is a great question. But it would be like something for like to do a master’s thesis on. So let’s try to do it in a tight format. Okay, so so let’s take heat sensitivity first. And I’m going to try to explain it without a chalkboard. But we’ll use this pen as an example. So this pen is a nerve and we’re trying to conduct electricity down the nerve. Okay, in the blue area is the myelin so when
the electricity goes, it jumps past the myelin. Alright, so it’s over here and the electricity jumps across the myelin. Now, if you here look at this, I removed the myelin haha. Okay. So if you remove the myelin, then the electricity cannot go through, it stops. And if this is God forbid, your optic nerve, you’re not going to see. Now what the body does, because it’s not very good at making new
myelin is it puts in a bunch of little water channels all along there. Now when you want to conduct electricity, you can it’s just very, very inefficient. Okay? Now if you heat the system up, you leach all the the ions and then it doesn’t work anymore. And if you cool the system down and it works again. So if you had an optic neuritis, God forbid and you couldn’t see and then your vision got better.
It got better because you put in those water channels. And so now you can conduct light through your eye. But if you get overheated it will short circuit again and then you can’t see anymore. And the reason that we see heat sensitivity is largely because of that adaptive measure. So the other one I believe we asked about cog fog and balance and to explain cog fall Let’s think about it
this way, if you and I went for a stroll. All right, so Gina and I are gonna go for a stroll in southern Wales, which I would love to do, except before we go, I tie bricks to her feet. And so in the rule is you have to keep up with me. All right, so we’re walking in step, except she’s dragging bricks behind her. And we do a loop around her neighborhood, and then we get back to her house. And we both finished at the same time, but she is absolutely exhausted, because she has done so much extra work to keep up with me. When you have MS damage in the brain, and in the spinal cord, the brain rewires. And it keeps rewiring and finding new pathways, but it takes up more brain space, more geography, to get the job done. And so when you are doing a task in the setting of having an
MS, you can do the task, you just use a lot more brain tissue to get the job done. And so that is the underpinnings in my opinion of fatigue, because you’re working your brain off in order just to do standard tasks. I’ll give you a quick example. Years ago, when I was a professor at a university, we did an experiment using a functional MRI, where you put a human in the MRI scanner, and you can see which parts of their brain light up. And when we put a healthy control who was me in the scanner, and we had me wiggle my finger, a strip of brain lit up. We put someone with MS in the scanner and had them do this, both hemispheres lit up like a Christmas tree. Now they were able to wiggle their finger just as fast as I could. But they used a lot more brain to get it done. And that’s where I think the problems with cog fog come from. Now, balance is a very, very complex behavior. It involves sensation in your feet, it involves sensation in the joints of your legs, it involves the inner ear and involves the vision in the cerebellum. And because it involves so many different things, it doesn’t take much of MS to cause a ruckus with balance. Because if you develop numb feet,
you’re gonna have trouble of balance. If you can’t see very well, you’re gonna have trouble with balance. If you have double vision, you’re gonna have trouble with balance. If your inner ear is messed up, you’re gonna have trouble of balance. So unfortunately, we very oftentimes will see balance problems in the setting of MS. All right, that’s a short attempt at answering a very, very complex question.

Regina Beach 42:31
No, this was really great. I suffered with heat sensitivity. And I’ve never heard it explained quite in that way. I thought that was really, really helpful, like kind of visualization of what’s happening in my body when I get too hot and can’t walk as well, or can’t do what I want to do. Wonderful. All right, I’m bringing Zoe back up for the next couple of questions I’ll see you in a bit.

Zoe Johnston 42:52
Those are some great questions. Yeah. And I am definitely had a big sip of water when you mentioned water in your top three. So reminder for everyone have a sip of water while you’re watching. And so on to the next question. And these are all themed around menopause and MS, which is a really important and popular topic. So yeah, as a woman of a certain age, I’m often not sure if my symptoms are menopause, or MS. How often should we check that we have the correct vitamins and minerals in our system? And should these be routinely checked?

Dr. Aaron Boster 43:22
So this is a wonderful question in a very, very important area. So menopause is something that affects all women, typically starting around age 40ish will go into perimenopause. And we’re typically experiencing full on menopause in our 50s, menopause defined as no menstrual cycle for a year. Now what’s happening actually starts kind of like in late 20s is the female hormones, estrogen
progesterone start to go down, right and that’s natural. But as they go down, we can see new neurological symptoms and worsening of multiple sclerosis. And I recently made a YouTube video on this exact topic because it’s very, very complex. But in short, when a woman is going through perimenopause, not MS. Just perimenopause, she can have difficulty with bowels, bladder, sexual function, falling asleep, insomnia, fatigue, cog fog, depression, hot flashes, right. So that’s not very nice. And you’ll notice that almost all of those symptoms can also be seen in the setting of MS. Now there is some data to suggest that when a woman goes through menopause, she may have less MS attacks, but her disease speeds up. Many of us know that women have a slower progression of
disability compared to men until menopause. After menopause, the rate of progression is that of a gentleman. So So what do we do about that? Well, I think it’s worthwhile I’d like to first of all be aware of it, and not to take it lying down. And there are some options to help with menopausal symptoms. So for example, hormone replacement therapy is an option, which has been shown to help with a lot of the symptoms that I just listed in the setting of MS. And there’s some caution, because if you give progesterone that can increase risk of certain cancers, and if you give oral hormone replacement therapy that can increase risk of blood clots. And so there are options of estrogen only topical patches, which can really substantially help. There are also creams for the downstairs, which can help with bladder, bowel and sexual function, which I routinely recommend. And there’s also pills for those ills. As far as fatigue, cog fog, depression, we can treat those, I think it’s worthwhile that the OB/GYN and the neurologist and the patient have a chitchat and look at the risk benefit of hormone replacement therapy in that individual human. But I think raising awareness of it is very, very important. Now, I’ve actually had some patients who have gone to the neurologist and said menopause menopause. And the neurologist said, Oh, I don’t know what you’re talking about. And so you can do a very easy Google search and find all kinds of articles on menopause affecting MS. And you might just bring your neurologist one of those articles and say, I have a little
something for you to read.

Zoe Johnston 46:24
Great idea. Thank you. I’ve got next, a quickfire question linked to menopause. That was a really great, thorough answer. And so this one is, is it beneficial for a postmenopausal woman to take hormone replacement therapy for estrogen so they can protect the myelin sheath?

Dr. Aaron Boster 46:39
I think there’s value. Now again, we have to, we have to balance the risk benefit, but I’m in favor of doing that I am.

Zoe Johnston 46:45
Okay, brilliant. Thank you good quickfire one. And next one, then is a really interesting question. And so this person has said, when I look back on this year and a half, the only time I felt these moments of no symptoms is when I’m experiencing greater than usual happiness and joy. I guess what I’m curious about is what’s happening in the brain and in the body. But this can happen if indeed there is anything happening during that time of joy.

Dr. Aaron Boster 47:11
So I think we touched on something very important. stressors can make MS get worse faster. And doing things to manage and grapple with stress is critically important to live our best lives despite having MS. And seeking out gratitude and seeking out contentment and seeking out happiness is a key element in living your best life despite having MS. Now that is a hard thing to ask a
western audience to do. And yet that is exactly what we need to be doing. So whereas I can, I can’t tell you with great authority, what’s happening in your brain, I can’t tell you that in states of happiness. hormone levels change in neurotransmitters change for the better. And so what I would do is I would instead cultivate those moments. What was the moment where that happened? Was it
experiencing or looking at the looking through the telescope at the universe? Was it spending time with dear pet? Was it doing a function with the grandchild? I would identify what were those moments and I would amplify them? Absolutely. I will also give a shout out to the concept of mindfulness. So mindfulness is defined as being in the present moment without prejudice. So
participating in an activity in the now without telling yourself a movie in your mind of what may happen tomorrow or lamenting about something you forgot. It’s being in the present moment in mindfulness has been shown to help with stress management quite a bit. I’m a strong believer that we should practice mindfulness at least once each day every day.

Zoe Johnston 48:51
Right, great tip something we can all take away. Definitely. Thanks, Aaron. I’m going to hand back over to Gina then.

Regina Beach 48:57
Great. Aaron, what’s your opinion on Ampyra for walking stamina and endurance.

Dr. Aaron Boster 49:04
So I love Ampyra for me, or fampyra outside the United States, the brand is a medicine, which only about 50% of people respond to. And we neurologists aren’t smart enough to figure out ahead of time who responds and who doesn’t. So as long as there isn’t a contraindication, which typically is a known seizure disorder, then we can give it to the patient to take twice a day. It’s a twice a day
medicine, and you have to take it for about two months before you know with authority whether or not it’s worked. Now going back to our previous conversation about the demyelinated axon. What the four amino paradeen does is is it’s a poison in it poison some of the water channels, which keeps the salt inside the nerve so that even when you get overheated they don’t leach out all the water
channels and so you can conduct electricity, which is pretty awesome. So when people respond to Ampera It’s kind of a Lazarus Effect, like, wow, because they get overheated and nothing bad happens. Now, in my experience, if somebody responds to ampyra, you can’t take it away from them, they won’t let you. Because it’s so meaningful. If you take it for two months, and you’re not seeing
any benefit whatsoever, I have people go down to one pill a day for a couple of weeks, then stop. In rarely we uncover Wait a second it was working, we just didn’t fully appreciate it. But I think that it’s a powerful tool, particularly for those that respond. Now, if you don’t respond to ampyra or you’re not eligible for ampyra or you can’t afford ampyra another way of skinning the same cat is to cool
the body. And so using a cooling vest, a cooling neck kerchief having your spouse run behind you with a water gun and spray you down, chugging ice water, staying out of the fray in the middle of the sun, you know, in the middle of the day, these are all other ways of grappling with heat sensitivity.

Regina Beach 50:55
Right? Nice night, so it sounds like there’s no contraindication, try it worst that can happen is nothing. Yeah. What about for someone who’s experiencing vertigo? This person has relapsing MS. She is generally symptom free and would like to manage without medication. But the Vertigo is te problem.

Dr. Aaron Boster 51:15
So there’s actually a magical person who lives in the physical therapy suite called a vestibular physical therapist, right? In a vestibular physical therapist has a second degree blackbelt in managing spinning, dizziness, are very, very adept at it. And they don’t use medicines, they use physiotherapy to retrain the inner ear to not make you feel like you’re spinning. And so get to the vestibular physical therapist. They will teach you maneuvers to habituate your brain so that you don’t feel so dizzy. Very, very effective.

Regina Beach 51:53
Yeah, that’s amazing. Because I know that can be a really debilitating symptom, or terrible. All right, this person is recently diagnosed, they’re currently booked for Ocrulizumab. But if they want to start trying for a baby, what’s your recommendation? How soon? Can they do that? Is this the right DMT for them?

Dr. Aaron Boster 52:12
So so this is the time where I give them medical disclaimer? And I say I can’t answer for you specifically, because I don’t have all the information, blah, blah, blah. But I want to speak in generalities, because it’s a very important topic. So So most people with MS are women of childbearing potential, right. And most people, the onset of MS is 30. And in the modern era, most women have not completed having their families by age 30. And so this is a very real, very, very timely topic. My opinion is I want the MS to be stable for a couple of years, before we plan to have children. Now, that’s my opinion, and I’m not the one having the baby. So my opinions, not the one that counts, but, but when I’m counseling families, I want disease stability for a year or two, before we pull the trigger, that’s my request. And we can talk about how we become pregnant and treat the MS. And so I’m gonna date myself. But back in the ancient days of yesteryear, where I had no gray and I had a full head of hair. When I started practicing, what we would say is stop all
your medicines, and get pregnant off all medicines, and have a baby with no medicines and then breastfeed with no medicines and then go back on. And fortunately, we neurologists have become smarter than we now know that there are many, many medicines that you can actually conceive on and take. And there was a beautiful French paper that was written two months ago maybe where
they talked about how they navigate Ocrevus and pregnancy. And so I’ll share with you what they do, because it’s what I do now. So you take Ocrevus for six months to a year, and that depletes your B cells. And then you take your ocrevus and then four months later, you have copious unprotected intercourse, right? So you attempt to conception, lots and lots of sex, no protection, and you want to try to become pregnant. And you do this and you don’t reduce the Ocrevus. Whereas you stay off the Ocrevus, you become pregnant and you gestate you carry the baby off Ocrevus. Then you deliver the baby. And if you choose you breastfeed in the study, women typically breastfed for 120 days. And then once you’re done breastfeeding, you give it Ocrevus. Now that’s really interesting, because what they’re doing is they’re leveraging the fact that B cells don’t come back right away. And these women
were essentially protected because they had been on ocrevus long enough, their B cells were low, they never came back. And in the trial, zero women had relapses zero women had relapsed, so really, really robust. And I think that’s awesome sauce. So, so in short, I would ask for a year or two of disease stability and then I think that even on Ocrevus There’s an easy breezy way to do it.

Regina Beach 54:59
I think that It is awesome sauce because Ocrevus is such a successful DMT. For so many people, it’s going to be so nice that they can stay on it and have the protection and have their family and make sure that there’s nothing changing.

Dr. Aaron Boster 55:16
It’s it’s a much better world that we live in and back in the day.

Regina Beach 55:20
Yeah, for sure. Great. All right. Well, these are the last of the pre submitted questions. I think I’m going to pass you back to Zoe.

Zoe Johnston 55:29
All right. Thank you. And we’ve got about 35 minutes left, I think, Aaron so yeah, we might need to speed up the questions a little bit. But at the same time, I’m loving all the really thorough answers. So I don’t know there’s a balance to be found somewhere somehow. And so the next question I got is what are safe DMT options for someone with JC virus and they said blood only not CBS and low lymphocytes they put 0.6 to consider and which ones to avoid.

Dr. Aaron Boster 55:56
So the question here is a concern of a risk of PML, which is a scary brain infection, which you could only have if you happen to be JC virus antibody positive. So here’s someone who’s JC virus antibody positive. So the thing that we would want to first of all, the risk of PML, even with drugs like Tysabri is extremely low, like, like we’re talking 100 to a 1,000th of a percent in the first couple of years. And so I just want to point out that many neurologists are scared little minds that are terrified of any risk. And we need to place the risk of the disease modifying therapy inside the context of the risk of the disease. And so I don’t want us to throw the baby out with the bathwater that stated If there’s a concern of PML. Avoiding Tysabri would be very reasonable. And just because of the lymphocyte count, we might also avoid dimethyl fumarate and dioxin fumarate. So that’s Tecfidera and Vumerity. There are plenty of drugs that are highly effective, where we really don’t see much of an uptick of PML. It’s not that there’s a zero risk, but the risk with a B cell depleter Kiimpta, Briumvi, Ocrelizumab. ocrevus is very, very, very, very low. And we haven’t seen cases of PML with
Mavenclad because we never drop out immunosurveillance. So I think there are many options to consider, despite being JC virus, antibody positive.

Zoe Johnston 57:25
Okay, perfect. Thank you. And we’ve got lots of questions on DMT. So I’ve got a couple more on that topic. First one is do sensory symptoms like numbness and feet require DMT medication.

Dr. Aaron Boster 57:37
When you have an attack, you short circuit and part of your nervous system. And we oftentimes will give steroids to hasten the recovery. But we don’t take a disease modifying therapy to undo the attack. Because we can’t undo brain damage. We take a disease modifying therapy, so something else doesn’t go numb. So think about it this way. If you have three children, and you start birth control, you have three children, they don’t go away. Alright. And if you wonder why you’re taking birth control, go hang out with your three children. It’s because you don’t want an unplanned pregnancy or unplanned event. So if God forbid, your leg is numb from MS, you’re on a disease modifying therapy because you don’t want the other leg to become numb.

Zoe Johnston 58:19
Yeah, makes sense. Very straightforward. Thank you. And the other one, at what age do you feel patients should stop their DMT?

Dr. Aaron Boster 58:26
Death? I don’t treat past death. I don’t believe in it. I refuse to do it. I’ve never done it my entire career. So when someone dies, I always stop the therapy, even if they don’t want me to, even if the family doesn’t want me to. It’s just the way I practice medicine, pre death, as long as they have neurological symptoms that they like. So for example, seeing smelling, eating, having an orgasm,
controlling their bowel movements moving their arm, if there’s anything that they like that I want to maintain that I want to preserve the reserve. And so I’ll use a disease modifying therapy up until that point.

Zoe Johnston 59:01
Right. Thank you. Great, I think I can see loads of great questions coming in from the chat. So thank you everyone for submitting those. And I’ll hand over to Gina for the next ones. Right.

Regina Beach 59:12
Aaron, how can we avoid worsening the optic neuritis after having five days of steroids?

Dr. Aaron Boster 59:20
Taking a disease modifying therapy is your biggest insurance policy against future events. That’s the number one way that I would do it. There isn’t a lotion or a potion. There’s some data that during steroids if you give Dilantin which is an old seizure medicine that may further help. But once you’ve treated the optic neuritis taking an effective disease modifying therapy is the insurance policy
against future bad stuff.

Regina Beach 59:49
This person read that MS can also cause the body to attack the membranes of the mouth leading to sores on the tongue but they hadn’t heard that before. Is that true? Can you shed any light on that?

Dr. Aaron Boster 1:00:00
No, that’s not true.

Regina Beach 1:00:01
Another false information. Thanks for confirming. And then last one for me. Can MS specificity be like a frozen lower back pain is back within the only solution to regulate this? What’s your recommendation?

Dr. Aaron Boster 1:00:14
So spasticity is a monster. And it manifests in three ways. spasms, like a limb that’s bouncing. A cramp like a charley horse, like where your muscle cramps up, and a limb that’s hard to bend. And so the muscles of a man or a woman’s back are huge. They’re the biggest muscles in the body. And if they have spasticity, you can be rigid and it can be hard to move and boy, can it hurt like the dickens it’ll drop a man. I can’t tell you how many times I’ve seen a guy in the emergency department, who swears to all the totally that he broke his back and it’s just a muscle spasm. Now what can be done, lots of things can be done. Massage, stretching, heat physiotherapy are where we start. baclofen is an option. But it’s not the only option. There are other medicines and we can also do botulinum toxin. So there’s a lot of a lot that we can do.

Regina Beach 1:01:12
Great. So no one should be struggling with this. They should talk to their provider they should get get one of those things going. And then if that doesn’t work, try something else.

Dr. Aaron Boster 1:01:20
There’s a multitude of things we should never ever settle to have spasticity because it’s just terrible.

Regina Beach 1:01:25
It is terrible. I struggle with it myself. And yeah, it’s definitely something I’m always try to be proactive.

Dr. Aaron Boster 1:01:32
Amen.

Regina Beach 1:01:33
All right, Zoe back to you.

Zoe Johnston 1:01:35
Thank you. And so this person, and they’ve said in their question, this may be a daft question, I just want to say that no question that we’ve had or will have aren’t as a daft question. I think they’re all brilliant, important questions. So they’ve asked, I’ve been on Tysabri for two years without any relapses. But do you feel like the feeling in my hand is gradually getting worse? Is that normal?

Dr. Aaron Boster 1:01:57
So there’s two ways that we can get worse from MS. There’s what we call RA or a W, which stands for relapse associated worsening, where you have an attack, and then you don’t fully recover. So let’s take an example of I have devastating numbness of my hand where I can’t feel it at all. And then it comes back 50%. Okay, so that would be relapse associated worsening. But there’s a second
way that you can get worse from MS, which is called PIRA. PIRA progression independent from relapse activity. And this is exactly what it sounds like where someone can have a slow, worsening, separate from an attack. And this is not just for secondary progressive and Primary Progressive MS, we can see it in relapsing. MS. So is it normal? Unfortunately, it can certainly happen. And
it doesn’t mean that we take it laying down. I mean, that’s, that’s a symptom that you bring to the attention of your neurologist, they might do some imaging of the spinal cord, they may do some testing of the nerves here, or here. And that may ultimately result in some changes to treatment.

Zoe Johnston 1:03:02
Thank you. And are there any ways to reverse the biological impact of MS in terms of lesion damage?

Dr. Aaron Boster 1:03:10
Functionally, yes, so the better in shape you are, the better you fare. And just to give you an example, if you cloned somebody with MS, and you have to get permission, and it’ll be very complicated, but just pretend like, we have two versions of somebody, and we give one of them exercise and healthy diet, and we give another one McDonald’s and Days of Our Lives television. Alright, so this
person becomes overweight and deconditioned and out of shape. And the first person is a Greek goddess with a strong core and strong legs and and then they both have the same attack of left leg weakness. The one that we pre habilitated is maybe limping and going to work and exercising and getting better quickly. The other guy was in a wheelchair. And all we did was allow her to become
deconditioned. So staying in shape is extremely important. It’s one of the least appreciated disease modifying therapies that exist. And I want you in the best shape possible because strong legs handle attacks much better.

Zoe Johnston 1:04:16
Yeah, sounds great just highlights the importance of how much we can actually do ourselves having to actually write thank you, the next person has said, Thank you so much for everything you do for the MS community. And their question is, what is your opinion on the Coimbria protocol?

Dr. Aaron Boster 1:04:33
So this is a protocol of ultra high dose vitamin D. And my my thoughts on vitamin D are in line with what I said earlier today, which is I don’t want the level to go above 100. So whatever protocol we’re using, however much we’re taking, I’m still gonna check a lab and if it’s over 100, I become concerned about some other effects. So that’s my opinion.

Zoe Johnston 1:04:59
Right? Perfect. Thank you. Gina, back over to you.

Regina Beach 1:05:04
And that’s 100 in the US measurement systems.

Dr. Aaron Boster 1:05:11
It’s the vitamin 25 OH level. And I don’t remember the unit’s shame on me. But you know, that’s a terrible, terrible thing to forget. But I apologize. At least I’m not making stuff up.

Regina Beach 1:05:22
Thank you for your honesty. And it’s nice to know that you too, are human. And you can’t keep every single little effect in your brain at all times. We appreciate that. All right, Aaron, here’s the next one. This person was diagnosed with relapsing MS 30 years ago, and in the past, had nasty relapses, but now and has made a good recovery, they’ll be 60. Next year, they’re still consider themselves to be very well. So do you think they’ll stay well? They’ve been following the Overcoming MS program for many years. They’re careful with their diet with exercise, are they out of the woods, so to speak?

Dr. Aaron Boster 1:05:59
They’re not out of the woods. So MS doesn’t go dormant in in your 60s, it’s been my experience that MS can start to go dormant in your 70s and 80s. That stated, I think that that there’s a high likelihood they’re going to continue to do well, because having done well is one of the best prognostic indicators for continuing to do well. So would I let my guard down? No. Do I think that they’ve
they’ve won the race, and there’s no concern? No. But if they keep on keeping on with their current regimen, are they likely to to make it to their 75th Birthday unscathed? Very likely.

Regina Beach 1:06:42
That’s great. It’s like cautious optimism. It sounds like stick to the path, do everything in your power. But yeah, that’s, that’s good to know.

Dr. Aaron Boster 1:06:49
I did and looked up the units, and it’s nanograms per milliliter. So it’s 50 to 100 nanograms per milliliter, but I didn’t know that I had to cheat. So I’m sorry.

Regina Beach 1:07:01
No, that’s all right. Thank you for looking it up. This person with MS is legally blind, they have some vision left. And they want to know how would a neurologist determined if the optic nerve is being impacted by the MS.

Dr. Aaron Boster 1:07:17
One way is to order a fancy pants test called an O C T. So that’s ocular coherence tomography, which shines a laser in the back of the eye and measures the thickness of the back of the eye. And that thickness is extremely informative about the health of the optic nerve in the brain itself. And it can get smaller over time with MS. And so that’s probably the best way to follow. It’s completely
painless test, it takes five minutes to perform. Another way is to do visual evoked potentials, which is a electrophysiologic test where they actually put stickies on the back of your head. And then they have you stare straight ahead and they shine a light in the eye and they measure how fast that conduction is. That’s another way to do it. There are some other tests that we can do in clinic. But if
you’re significantly impacted by vision, they’re a little bit tougher. And so those two particularly the OCT I think, is a great way to do it.

Regina Beach 1:08:13
That’s great. So there is options. There’s ways to have that information. Here’s another one on optic neuritis. This person has been diagnosed two years ago. Their MRIs don’t show new lesions, but they did have a rebout of optic neuritis. So what does that mean?

Dr. Aaron Boster 1:08:35
So that means that they have relapsing disease and that it’s still a bit active. So if you have an attack, or if you have a new spot, it means the same thing to me. That means that we have disease activity. The the attack is clinical disease activity, the spot is radiologic disease activity. They’re both bad. And they both merit treatment.

Regina Beach 1:08:59
So like you said before, the MRI on its own is actually secondary to the symptoms and the lived experience of the person with MS.

Dr. Aaron Boster 1:09:07
Absolutely. Exactly. So so I can’t stand it when the neurologist says no, no, honey, you’re fine. Because the MRIs fine. No.

Regina Beach 1:09:15
Great, thank you. Alright, Zoe we’re back to you.

Zoe Johnston 1:09:19
Thank you. This person has said Thank you, Dr. Boster. I am newly diagnosed. I’m a newly diagnosed male in my mid 30s. And I’m JC virus positive. I would like to start a family soon. Would you recommend stem cell therapy over DMT? And if yes, in what situations?

Dr. Aaron Boster 1:09:38
So, in keeping with our earlier discussion, I would not recommend stem cell over DMT unless it’s an extreme case, and it doesn’t sound like it’s an extreme case. So So that’s not the route that I would necessarily go now. If you’re in the UK and they’ve offered you stem cell transplantation then you do qualify you must have very, very severe disease but all comers without having adequate
information, that’s not where I would start. Now guys get off easier than gals, because very, very few MS drugs pass through the sperm into the partner. And so as far as options for treating a young man who wants to sire children, it’s not that big of a deal.

Zoe Johnston 1:10:19
Okay, that’s interesting. Thank you. And next one, is frozen muscle considered a flare up of MS.

Dr. Aaron Boster 1:10:27
Not necessarily, again, humans don’t come with manuals, you know, where you have a frozen muscle and you look up the answer, like on page 84, you can have a frozen muscle because of disuse. So I saw that earlier today, a patient of mine hasn’t been using her shoulder and it’s becoming frozen. But you can also have it because of other things like severe spasticity, you know, there’s a host of
things. So it’s a symptom, and then we have to explore what caused the symptom, you know, so a cough is a symptom. And so do you have a cough? Because you have tuberculosis or because you swallowed a feather? You know, we have to do investigations to sort it out.

Zoe Johnston 1:11:05
Right, thank you. The next one is a bit of a longer one. So bear with me. I was diagnosed approximately two years ago with quite a significant amount of legions. And when you’re ready, just put me on what he calls a fairly aggressive DMT. And they’ve said they it was rituximab, to avoid any chance of future relapses. Now that I’ve met more people with MS, I’m curious to know, why wouldn’t we want everyone to avoid relapses by taking a more aggressive DMT?

Dr. Aaron Boster 1:11:32
We would. So so. So you’re spot on. Let me tell you a quick story about two countries. One is Denmark, and one is Sweden. All right. And they’re both socialized healthcare. And they both have national plans for how they treat MS. So in Denmark, everyone gets a low efficacy medicine at diagnosis like 98% of people do. And only if there’s problems do they escalate. In Sweden 18%. So almost a fifth start on rituximab, which is a highly effective drug. And then you know, the rest of them start on low efficacy medicine. And there was an investigation looking at disability progression over time. And what they found was the Swedes did way, way, way better than the Danes. And that’s not 100% of people going on highly effective drugs. That’s just 20% of people going on highly effective drugs. So I am of the strong opinion that the escalation model is terrible. And if we’re going to treat I want to use the most effective drug that the patient is eligible for. Yeah, this person has is very thoughtful, and I agree with them.

Zoe Johnston 1:12:43
Right, thank you. We’ve went through my questions. Gina, back over to you.

Regina Beach 1:12:48
All right. This one is another one about families. So this person was diagnosed 10 years ago, they don’t have any new exacerbations since then. But they do have a family history. There are two other family members with MS. At what point should this person tell their children so that they’re aware of their history and what actions in addition to following the Overcoming MS program can be taken to further reduce the possibility of the children developing MS.

Dr. Aaron Boster 1:13:17
So the the conversation needs to actually happen very early, because the risk to a child is modulated, typically pre puberty. So low levels of vitamin D, pre puberty can increase the risk to develop MS. And so making your child go outside and play is a good idea. And maybe supplementing your child’s vitamin D with supervision from their pediatrician is a very good idea. Second hand and firsthand smoke massively increased the risk to develop MS. And so I would avoid people smoking around my children. And no parent that I’m aware of tells their kids smoke up Johnny, you know, encourage their child to smoke. But in the setting of having MS. You have a very, very strong additional reason to make sure that they do not smoke. Morbid obesity amongst children doubles the risk of developing MS compared to being a skinny Mini. And so making sure that your child is not morbidly obese is another modifiable risk factor. And there’s some evidence to suggest that inactivity does as well. So make them go run around outside. Now the biggest thing that we could do to decrease risk, we don’t know how to do yet which is to avoid exposure to mono. Alright. And that’s impossible because 95 plus percent of America has been exposed to mono you literally have to keep your kid in a bubble, which is not appropriate. So those are all things that we can do to lower child’s risk.

Regina Beach 1:14:52
And any tips about telling the kids they’re teenagers now about their risks, what’s the right tone to strike without being too fear mongering?

Dr. Aaron Boster 1:15:02
You know, you’re getting older. And so I’m I trust you now to understand things that you might not have fully understood when you were younger, I have an autoimmune condition, and I want you to know about it. And it’s an autoimmune condition where my immune system can attack my brain and spinal cord. And so sometimes I can have problems. And that’s why I see doctors and take
medicines and follow the OMS lifestyle. And because I have MS, you have a slight increased risk of MS. And so I want you to be aware of it. Now, do you need to freak out? No, do you need an MRI? No. Do you need to see a neurologist? No, you just need to be aware of that. And so if there’s problems in the future, then you feel, you know, like, you know what’s going on?

Regina Beach 1:15:46
That’s really great. That’s, that’s perfect. Thank you. This next person got their first half dose of Ocrevus, but then decided not to continue, they want to go back to Tecfidera. Or maybe they want to go to Gilenya. They’ve become scared of the risk of increased breast cancer, even though their neurologist has said that it’s okay tried to reassure them. What, what’s your opinion on this
scenario?

Dr. Aaron Boster 1:16:15
So ocrevus does not cause breast cancer, period. Right? So let me repeat that Ocrevus does not cause breast cancer period. So when we did the clinical trials, and I was an investigator on OPERA I and II and ORATORIO, six women on Ocravus got breast cancer in all of us, myself included, went, Oh, my gosh, you know, and we studied it. And what we found was statistically, the risk of breast
cancer was the same as the general population. Now, there’s over 320,000, humans who have taken Ocrevus postmarketing, since it’s been approved, two thirds have breasts. So that’s a lot of boobs. And we have tracked the risk of breast cancer amongst Ocrevus treated people with MS, the risk is exactly the same as the general population. Now, let me tell the story a different way. I have two patients who are both very dear to me. Both of them are women who have survived breast cancer and have one breast. Both of them have Primary Progressive MS, which is the only which Ocrevus is the only drug to treat. And so when the drug was FDA approved, both of them they don’t know each other, called me in tears and said, Oh my gosh, my you know, I won’t be eligible for this. My oncologist will never let me take it. In both cases, I call the oncologist, two different oncologists, both them said, Send me the package insert. When they read it, they said, What’s the problem? Give it to her. So, so there, the risk of breast cancer is not increased with Ocrevus.

Regina Beach 1:17:42
That that’s great. So it sounds like there’s maybe some misinformation or some fear, unfounded fear. So having all the information in front of you, I know, it’s really difficult to read those. You know, they’ll give you the drug pamphlets, they’re all really, really scary. It’s really difficult as a layperson, try to make a decision about your own care as to what you will and won’t tolerate.

Dr. Aaron Boster 1:18:07
And if you look at the the label, it says, could cause breast cancer, because the manufacturer never paid to have it taken out. It’s like hundreds of millions of dollars to have changed. But the data is extremely clear that it doesn’t increase the risk.

Regina Beach 1:18:24
That’s really reassuring. Thank you. Thank you for that. Okay, so I didn’t see this webinar. But this person did. They saw you in a webinar where you had a color coded prognosis chart, where a patient assesses their own disability impact, and the years since their diagnosis to estimate their long term prognosis. Can you talk about this chart and how it’s impacted by DMTs, and maybe just refresh everyone if we if we didn’t see this webinar.

Dr. Aaron Boster 1:18:54
So what the person is referencing is a tool called the P D D. S, the patient determined disease step, patient determined disease step pdds. And if you type in PDDS into a Google search engine, and hit Enter, and then hit image, you’ll find this pretty colorful chart. And on the x axis across the top is the answer to the PDDS question, which is, how have I been doing and then it goes from zero to like eight and zero is I have nothing wrong at all. One is I have mild symptoms, mostly mostly sensory, they don’t impact my life at all. Q is I have very mild symptoms. They don’t interfere with walking but they do interfere with some things and then it goes on and on and on. And so the patient can answer that question. And then on the y axis going down is the number of years since
symptom onset. And then you can triangulate and it gives you a Color. And at the bottom. The colors are color coded by decile, which means top 10%, second 10%, third 10%, all the way down. And what it allows you to do is in a snapshot format, say compared to other people who have MS as long as me, how do I shake out? And let’s pretend that you’re fifth decile. So what that means is, for however many years you’ve had MS 50% of people with MS are doing worse than you and 50% of people are doing better than you. Let’s say that you’re in the first decile. That means that all people are doing worse than you or as good as you, but nobody’s doing better than you in groups. And the key is that typically people stay on their color. So you can kind of follow it down. And you know, let’s say you’ve had MS for seven years, well, the scale goes to 45 years. And so you can kind of follow your color. But we believe that disease modifying therapy can shift that. So keep in mind that the natural history of MS is that you get worse over time, right? Untreated, you’re you’re likely to get worse over time. And so if you hold the disease steady, you’re winning, you’re beating the disease. So take someone who unfortunately needs a cane. And 10 years later, they’re still using a cane. That’s not what the natural
history would suggest. And so the fact that they’re still only using a cane is evidence that they’re winning. So it’s the PDDS is what they’re referencing.

Regina Beach 1:20:37
That’s great. I think so much of that with MS is if we are not deteriorating, we are winning. If we are staying the same, we are winning. And that’s sometimes like mentally difficult, but it’s really nice to hear. And to be reminded like, Oh, yes, staying the same is a great thing. Yeah. Great. All right, back to Zoe, for some quick ones. I know we only have 10 minutes left.

Zoe Johnston 1:21:54
Yeah, we’ve got about 10 minutes left, and I think around eight or nine questions. So these might well have to be a bit more quickfire maybe around a minute each. So next one, I read a lot of material about alcohol and MS. Some say it makes it worse. Other say it helps What’s your opinion, please, plus, really loving all of your explanations here and all of your YouTube videos, so a lot of people
really enjoying the webinar.

Dr. Aaron Boster 1:22:16
So I don’t think alcohol helps MS. And I don’t think that we have to completely avoid alcohol. That’s my opinion. But a couple things we have to keep in mind, alcohol can depress the Balance Center and the executive decision making centers of the brain. And so if you already have difficulties with balance, or executive function, alcohol can make them temporarily worse. Also, the average person with MS takes seven medicines, and most of those are metabolized by the liver. And so is alcohol. So you want to make sure that you’re safe to drink. Now, most men can metabolize about two alcoholic beverages a night and most women can metabolize one. And so that’s a place to start from. I don’t think that you should avoid alcohol like the plague necessarily, but I don’t think it’s going to help the disease much.

Zoe Johnston 1:23:06
Right. Thank you. Can you suffer optic neuritis more than once?

Dr. Aaron Boster 1:23:11
Yes.

Zoe Johnston 1:23:13
Perfect, simple answer. And I’ve heard many people after a while have a repeat MRI and a found not to have MS. Is this common in your opinion? And could this be due to moving during the MRI?

Dr. Aaron Boster 1:23:28
So I have been doing MS for nearly 20 years and I have not heard of that. Where many people have repeat MRIs and are not found to have MS. I do think that you need a qualified neuro radiologist or neural immunologist to read the MRI to make sure that they’re meeting the diagnostic criteria for MS. Every spot that you see doesn’t equal MS.

Zoe Johnston 1:23:50
Right. Thank you, Gina back to you.

Regina Beach 1:23:53
All right, another quick one. Should you only do physiotherapy when you have acute symptoms? Or can it help to prevent future disability?

Dr. Aaron Boster 1:24:00
Rehabilitation is the key. We want to pre hability I want you in the best shape of your life. And then I want you to exercise a little more.

Regina Beach 1:24:09
Right? Always. Yes. Onward, upward, faster, just a little bit, right, those little bits add up a lot. Huge. Yeah. At what point should this person consider changing their DMT? They’re on Kisimpta, but they have had recent blood tests showing their B cells are low. So is that normal? At what point should they make a change?

Dr. Aaron Boster 1:24:29
So I don’t think that you need to stop Kesimpta because you have low B cells. There’s five conditions where we would change a medicine or at least talk about it. If you have an attack on a medicine, that’s not okay. If you have new spots on a medicine that’s not okay. If your exam worsens on a medicine that’s not okay. If you can’t tolerate the medicine, that’s not okay. Or if it’s no longer safe.
That’s not okay.

Regina Beach 1:24:50
Great. So if it doesn’t hit one of those, then we’re still fine. Stay the course as long as it’s working. Wonderful. All right. Zoe back to you.

Zoe Johnston 1:24:59
.So we are down to the final few questions and we still got around a bit over five minutes. We’re doing really well. And the next question is What is your opinion on PONS therapy, or your opinion on neural sleeves?

Dr. Aaron Boster 1:25:17
The My opinion is very different from one versus the other. I’m not sure the PONS therapy is real. I’m very concerned that it’s charlatan type stuff. The neuro sleeve, the Cionic sleeve, I think, on the other hand, has some really good data to support it. And I think with a neuro physical therapist can be really, really exciting to us. But I would not spend money on the PONS device myself.

Zoe Johnston 1:25:42
Okay, great. Thank you. I’ve not heard of that myself, personally. So interesting to get your thoughts on it. The next question, and the last one for me is on what DMT do you recommend for secondary progressive MS.

Dr. Aaron Boster 1:25:55
So I don’t believe that there’s different kinds of MS. I think it’s all one disease. And so I want to medicine for secondary progressive MS to say I want one for primary the same one I want for relapsing, which is a medicine that decreases risk of attack, decreases new spots, slows brain volume loss in slows disability progression.

Zoe Johnston 1:26:16
Sounds sensible. Great. Thank you. Gina, I think you’ve got the last couple of questions.

Regina Beach 1:26:21

All right. Great. Thanks. So all right. If an MRI shows new lesions, but you don’t have a relapse, you’re don’t have increased symptoms. What does this indicate this kind of the flip of a question we had earlier this evening.

Dr. Aaron Boster 1:26:35
The disease is active and it just didn’t happen to manifest clinically. So if we took that new spot, and we dropped it in a scary area, we could make you blind, God forbid, we could make it so you couldn’t move your arms or legs? God forbid, we can make it so you couldn’t swallow? God forbid. It’s just by happenstance that that new spot didn’t hit any eloquent areas, but it means the exact same thing.

Regina Beach 1:26:57
And so you would recommend treatment you would recommend?

Dr. Aaron Boster 1:27:01
All the things, just like if you were having an attack. Great.

Regina Beach 1:27:05
Thank you. All right. And our final question. So thank you so much for joining us and answering so many of our listener questions. It’s been really, really wonderful. I’ve learned a ton. This says lots of people want to pass on their thanks to you for taking the time to answer their questions. We focus and talk a lot about physical and visible symptoms of living with MS. Obviously, that’s what people
see first. And that’s I think, for myself, what’s the most worrying sometimes, but it’s World Mental Health Awareness Day next week. So what are some top pieces of advice to enhance mental health and remain positive in what is often a really up and down mentally challenging condition to live with?

Dr. Aaron Boster 1:27:55
Absolutely. So that’s a beautiful question. And the reason it’s a beautiful question is some of the worst pathology the worst symptoms in MS are invisible. They’re not seen by the outside observer. And amongst them is what I call the up there’s the up there’s, which is thinking and memory, Energy, and Mood, which are all tied together with a bow. And so it’s very, very common that
people impacted by MS can have trouble with the up there’s, in as it relates to mood, people impacted by MS are twice as likely to experience depression, compared to the general population. They’re also twice as likely to experience anxiety compared to the general population. And if you take someone with MS and put them in a global viral pandemic, they’re probably going to have some
mood stuff, just statistically speaking. And so I think the first thing is awareness that you’re not alone, and it’s not abnormal, to experience some difficulty with mood, right? And we need to avoid hiding that. And the reason we need to avoid hiding that is it’s really, really very treatable. It’s extremely treatable. So identifying that there’s a mood problem, the first thing is to be like, Hey, I
have a mood problem. So I Aaron have clinical depression, I Aaron, see a therapist. I Aaron, take two antidepressants, and I exercise and eat clean to help my depression. All right, there’s no shame in that game. And I do really well, because I work really hard. And I want you to do the same thing. So what can we do to try to help mood in the setting of MS. Right? Exercise is very key. eating clean
and avoiding processed foods and sugar laden foods is very, very key. Talking to a trained listener who’s not a family member is very key. Because if you tell your spouse, you’re sad, they have an emotion, or they’re not objective, and it disallows those aha moments. But when you talk to the therapist, and you say, I’m sad, they say, and they they act as a sounding board so that you can figure out the solutions group therapy has been shown to help as well. So medicines can be extremely helpful because we now understand that depression is nothing more than a chemical imbalance. And that we can adjust it with medicines. And so I look at treating depression as an and not an or, I want to bring every tool that you’re comfortable with to bear so that you can live your best life
despite having MS. The other thing I want to share is that untreated depression actually results in MS getting worse faster, which is terrifying. So even if you’re like, Nah, I don’t want treated, there’s an additional reason to seek out treatment to slow down yourdisease.

This webinar was recorded on 3 October 2023 as part of our Finding Hope with Overcoming MS – Webinar series – Season 4.

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