22 posts Page 2 of 3
ScienceFan wrote:
bannrikae wrote: There used to be a downloadable reference guide with an allowed and not allowed list, this was very useful but I don't think it's available now, if it is, it's not easy to find.

BG


That sounds ideal! If anyone could point me towards a quick reference guide like that I'd be very grateful! :)


There's a quick guide here:
https://overcomingms.org/recovery-progr ... ot-to-eat/

There's also a few MS recipe groups as well as the recipes on this site. This Facebook group has some good recipes:

https://www.facebook.com/OMS.what.we.eat
OMS since 17/08/2015
Diagnosis 28/05/2015 - 22/09/2015
Brilliant! Thank you Diggity :)
The original post is still open by the way, if anyone can relate to these symptoms in any way. I'd like to think that it may help someone experiencing something similar and is maybe too scared, confused or embarrassed to ask about it.

As an update, when a bit of time had passed, and I thought that things had calmed down a little, as an experiment I thought it might be safe to try again. I found that I was ok at first, but then I started experiencing pain in my legs and also noticed I began to have trouble swallowing, awful sensory feelings in my arms, my balance and dizziness got worse, and I started slurring my speech. All within about a day of trying it again.

I also noticed that the speech slurring and balance problems then continued to happen after doing anything strenuous. I'd been trying to get exercise and keep active, so this has left me somewhat afraid to do anything that tires me out somewhat. I'm now unsure and rather scared about what I can and can't do.

More recently I have been waking in the mornings with a headache and worsened pain in my legs. I should probably also say that I'm not on any medication.

I'm visualising that if I refrain entirely, whilst sticking to OMS, things begin to calm down, and I heal. But as I am single, I'm genuinely finding this very difficult as time goes on. I confided in another friend about my fast for 4 months and he asked me if i'd contacted the record books. Any advice on coping mechanisms would be gratefully accepted, as I don't know how I'm going to keep doing this for the rest of my life. I have found that the meditation has been helping in this department.

So, now I'm not sure how to proceed. It's very apparent to me that it's having a definite affect. I'm even suspicious that it may have kicked it all off in the first place, because I remember in the run up having odd sensations, like my body was being 'stressed' (If that makes sense), then eventually all this started. I hope this is making sense to someone out there. :?
Hi there

I feel your pain and distress. The best thing you can do is throw yourself into OMS and hope that over time your body will fix this.

I've also been affected in this area. Really sad about it but I also live in hope that things will get better in the long term.

All the best
Thank you for your kind words Sedona Arabelle, it helps to know I'm not alone.
Time has passed and I've since read this recent article about Cerebral Microbleeds
http://www.ms-uk.org/june15

After reading this and with everything that I've described here, I'm almost certain that this is what I've inadverantly caused. It all fits, the nature by which the initial symptoms appeared, how they have fluctuated whenever I tested to see if doing it again had any effect, and how it's further influenced by doing exercise that gets the blood pumping. I can't help feeling that there have been and likely will be many people who find themselves in this position and don't report this part to their doctor through embarrassment or a feeling of shame. Both of which should not be felt. On my part, I feel it's not solely been this, but also combined with many years of high amounts of stress, high blood pressure, staying indoors and social isolation.

Recently I have been experiencing almost constant headaches, and just recently I experienced extreme pain for the first time in my spine, pelvis, in random patches over my arms and legs and the backs of my hands and tops of my feet.


In my mind, from putting everything together so far, this is what's happening.. (feel free to comment)

There is a Cerebral Microbleed happening, initially caused by the reasons above. This occurs already inside the membrane the brain is inside so there is no crossing of the blood brain barrier, this causes an auto immune reaction as reported here : https://overcomingms.org/a-single-drop- ... ink-in-ms/

I've described the constant sensation in my head (since diagnosis) to doctors as feeling like someone had poured battery acid into my brain. Given what's happened, I think that it's either a reaction, or the immune system's attempt to clear blood out of the CSF, where it shouldn't be. Further, the CSF of course leads down into the spine and out through the nervous system, so if there's blood in the CSF, it can get there too, the Immune system follows that as well. How at that point it's becoming confused with the myelin is what I don't get, there must be some kind of relationship between the foreign body in the CSF (blood) and myelin. The fibrinogen molecule?

What's been interesting and reinforced my understanding is that I just started on Tecfidera treatment. This was just as the bad physical symptoms began and they immediately waned a bit. This made me think "The immune system is being suppressed a bit" So, as an experiment I tried what the topic of this thread is all about again. Sure enough, I could feel the same symptoms happening again, albeit this time to a slightly lesser degree. Which made me reason that any kind of blood pressure exertion when you have a cerebral microbleed is antagonising the situation. I have also been trying to get regular physical exercise, and have also found that the symptoms were worsening after this too. (Although not immediately after) Under these circumstances, having a treatment which partially supresses the immune system, which although helps, made me think it was like manually emptying water out of a sinking ship, instead of finding and plugging the initial leak.

So now I don't know what to do? I *want* to follow the OMS lifestyle as closely as possible, and I am with the diet, meditation and supplementation. I just don't know what to do about the physical side of it, because with everything that's happened, I've been able to demonstrate and reproduce that the increased blood pressure is causing the microbleeds to worsen, and in turn cause more symptoms.

I also need to find a way of convincing my doctor to listen (even just try to get an appointment with him) which is sad that I need to do, but as I explained when I first tried to broach the subject with him quite a while ago, he just said 'Doing that is perfectly natural' in a reassuring/dismissive tone. Which I know perfectly well already and isn't why I was telling him. Everything I've read on this says that time is of the essence, it isn't something that you should just passively attempt to cope with.

Thank you for reading. Does anyone have any info, advice or recommendations about how to treat microbleeds? It seems it's a conclusion that research is only now associating with MS. Frankly, I'm now pretty convinced this is what's caused it all for me.
Hey ScienceFan,

I just noticed this thread - it's hard to write about so good on you for starting the guy's version. :)

Did you end up getting an MRI after your concern about a possible microbleed? I don't know anything about it, but I hope you've worked out what was happening. And have you chatted to the doctor yet? (Hope you don't mind me asking!)

I guess my first thought was prolactin which surges through the body after climax to bring down the high levels of dopamine. I'm no scientist but I was just trying to think about what goes on in the brain.

i know some stuff is embarrassing to raise with the doc, especially of the opposite sex, but that's what they're trained to be there for. By the time they've finished their training (which includes sexual health), they are not phased by those kinds of questions, trust me!

Courage! :) x
Transverse Myelitis 2008; MS diagnosis July 2014 (relapsing-remitting); OMS July 2014.
Hi Sabinerose, thanks a lot for your kind words, and for giving me the courage to speak about this in the first place :) I don't mind questions at all, in fact I welcome them.

I didn't get the follow-up MRI that's weighted for bloods, as the neurologist refused it. He said that they don't do anything unless it's going to affect a change. As you can imagine, I'm not very happy about that and have been thinking about how I can possibly get it done privately and how much it might cost.

Where i'm at now, it seems so blatantly obvious to me, that this was caused by an injury, most likely a tiny bleed. All the evidence is pointing heavily towards it. Like some people here, it did not fade in gradually. I never had a history of symptoms or anything like that. This literally happened overnight. I felt the tiny injury that's caused all this to happen as it occured.

How I can convey this is the difficult part. When I try to broach the subject of what I had been doing habitually for a long time (coupled with a great deal of stress) I kind of get a sympathetic look, and the phrase the neurologist used was "That's perfectly natural". But as I keep thinking I should have said, "I know that! that's not why I'm telling you about it". I'm not looking to be reassured about the act itself, it's to explain what's happened, and how it happened, to enact a possible plan of action.

He did mention, through the nurse, that they can't do anything about micro-bleeds. But as it's now been demonstrated that these do trigger auto-immunity, I'd rather have that fact for me known and in my record, rather that it being treated as 'just another case of MS'.

My symptoms are still just steadily increasing, I reported back at the beginning that it's never felt like relapsing remitting, it's never been stop/start. It's always just been a steady increase since day one. That is still the case, with the majority of it being the sensations in my head, which I described as feeling like having battery acid around my brain, recently it's also felt like I had a nose bleed. I'm being treated with Tecfidera, but I am seriously considering treatment with Lemtrada, as this is obviously worsening, and I can't just allow it to happen. How to get the neurologist to listen to me is the most important thing.

On a related note, this looks like one of the most promising areas of treatment research to me :- Myelin Antigen Treatment... http://www.healthline.com/health-news/m ... s-060513#1

http://www.nhs.uk/news/2014/09September ... rosis.aspx

I mentioned this to my nurse and she hadn't heard of it which I was surprised about considering how effective and side affect free it's proving to be. It looks like it's already been in the pipeline for a few years.

I continue to hope that the information in this thread is useful to someone who finds themselves in a similar predicament, or who can offer some advice or help.
What would you happen if you took yourself to hospital? And described the symptoms and THEN say you have MS?

Also where do you live? I had a really thorough neurologist in Brisbane named Dr Stephan Blum. Although he was bemused by my diet changes, he welcomed the high vitamin D I was taking, and he's a researching neurologist so more open to exploring other links/ideas than many.

It just sounds to me like you need urgent attention - best not to downplay your symptoms. Sometimes you've really got to make a fuss to get the attention you need.

Really hope you work out soon what's going on!
Transverse Myelitis 2008; MS diagnosis July 2014 (relapsing-remitting); OMS July 2014.
Thanks, I live in Scotland. Apparently the world's capital of ms. The national health service here is stretched to it's limits, and has been that way for a while. It's a case of get you in get you out as quickly as possible to make way for the next patient. After I was initially treated with steroids in hospital way back at the start, they discharged me with some co-codamol. There are stories in the news here quite a lot of people being sent home, only to either be rushed in later with major problems, or they actually die. It's frankly terrifying.

I've walked back into to the hospital a few times trying to get help, it's generally always the same answer. "Wait to see your neurologist". I have been. For a year. I'm in no doubt now that I need serious help and it isn't coming anywhere near fast enough. But i'm just another person lumped in with a huge crowd of ms sufferers here in an already overstretched system. So from my point of view I'm just slowly decaying. The nerves in my body are slowly being taken apart everyday, I feel it all happening, and I have no choice but to bear it everyday, I'm just taking painkillers every four hours which maybe give me about half an hour to an hours moderate relief each time.

I have a habit of downplaying things, I think I definitely did that to begin with. But when I did try explain to the nurses, I get the distinct feeling that I was just labelled as "An anxious patient". Which is a term thats bandied about here which pigeon holes you, and I think has the side effect of you not being taken seriously. So it's now critcal that I'm as clear as possible, playing things down is just not an option.

I really don't know what to do now. :/ Each day just gets worse. But I've still been sticking to the OMS lifestyle throughout, I stick to the diet and try to get daily exercise. All the while not knowing if the exercise part is just aggravating (by increased blood pressure) a different, specific situation which just happens to produce ms symptoms.

The Antigen Treatment in the works looks like the best possible hope, or failing that Lemtrada, but that has too many scary side effects.

Sorry for the long posts, but this is literally the only place I can speak my mind.
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