12 posts Page 1 of 2
Hi All,

As I mentioned in a previous discussion on this forum, I was diagnosed with cyclic MS in Jan 2015. At the appointment my neuro informed me of the diagnosis, he was insisting on my taking medication early mentioning scientific evidence was to the effect that acting early was paramount to staying healthy for years. Failing to take medication or waiting too long, he said, would jeopardize my chances of staying healthy. As a male over 50, he continued, MS is shown to be particularly aggressive so we need to act now.

At that first meeting, he proposed Aubagio, essentially on the grounds that it was the only medication that could be taken orally (no injections). When I got back home and started reading the literature about the medication, I figured I'd wait for another relapse to happen, particularly given the fact I decided in the meantime to make a drastic diet change.

Disclaimer : I am NOT following the OMS diet. Rather, I opted for the Seignalet diet about a month and a half ago : no dairy, no gluten, no corn, more fish, meat allowed (preferably mean and raw or lightly cooked). Add to that diet an intake of 1000 IU Vitamin D daily (replacing one of them weekly with a 10 000 IU pill prescribed by my neuro).

So about a month after my diagnosis I get a phone call to schedule another meeting with my neuro, since I yet had to make a decision, that is accept to take the suggested drugs. The meeting is planned a month later (yesterday). At that time I'm into my diet a little under a month. I feel well and at that stage I'm ready to tell my neuro when I see him a month later that "hey I'll wait to see if my diet change and vitamin D do me any good before embarking on the pharmaceutical bandwagon". But ... March 1, I get an itchy belly. The day after, it's still itching and soon enough I notice the surface of my skin is numb in the lower rig cage, back and belly, right-hand side. Darn ! I now have to admit, irrespective of my apprehensions, that the facts speak of themselves : for the last three years, I've had one relapse per year on average. I had neuritis in the spring of 2013, then diplopia a year later and now this.

Of course my neuro was quick to point out this was a clear sign that my MS is active. There's no denying of course. But to my surprise he did mention Aubagio again, but this time we were lucky to get this new drug, BG-12 (Tecfidera) that whatever medical authority (I think it's my country's) now accepts as first-line treatment. And that becomes even better an option than Aubagio, especially, the MS nurse in my hospital continues, since studies show that "naive" people, that is people who were never given any medication for MS, respond better to the medication. And there's more : the manufacturer covers the portion not covered by my medical insurance for the whole time I agree to take the medication (offer comes to an end in May though ...). At this point I'm thinking maybe yet another new medication will be offerred to me if I show up in another 6 months ...

That bugs me. I feel I'm both rushed into medication, yet I'm not sure if the diet really has started to kick in. That third relapse is the less severe of the three (I'm told that doesn't mean anything though), but to my neuro that is evidence that MS is also at the level of my spinal chord now. I am not asking for "advice". I'm asking for people's experiences. What would you do or what have you done in such a situation ?

My shallow understanding of MS tells me there's a lot of alchemy here. Some doctors favour medication #1. Others favour medication #2. And the same doctor will change his mind (no offense there, only crazy people never change their minds) whenever a new silver bullet shows up, even if the scientific action of thesaid silver bullet isn't well known. I don't want to hide my head in the sand either. My illness IS active. Period. Not acknowledging that would be plain irrational.

My gut feeling at this stage would be to take the risk of waiting for a fourth relapse. At my current rate (a little over 1 relapse per year), I'm far from figures I've seen (e.g. 2.7/yr) so maybe I can risk waiting for that fourth relapse before hopping on the medication bandwagon. I recovered 100 % from the first two relapses and I'm a clear 1 on the EDSS scale. I'm pretty sure I'll also fully recover from the current relapse. So, folks, what would you do ?

For a start, I would rethink the vitamin D dosage that you are taking - it seems too low. I take 10 000 IU per day. sorry if I am being obvious, but have you had a vitamin D level test done. You may need to take a mega dose - low vitamin d could be a contributing factor in your relapses. Taking 1000 IU a day or 10 00 a week will not alter your level significantly, if at all and will be far too slow if your level is currently too low - check out the FAQs for more info. Many of us, myself included, have had up to 200 000 IU in one single dosage in order to get the vitamin d up. Also, the stats on flax seed oil are very good (around 70% less relapse rate if you take 20-40 ml daily). I can't answer as far as the meds go, because I only take LDN, which has stabilised my condition (I believe) but I would suggest that the Vitamins D and B12 and flaxseed are essentials that you may be not getting enough of/missing out on.
Thanx for you answer nryan. I asked my neuro about checking my vitamin D levels and he brushed my request off saying he simply gives vitamin D to all his patients so ther's no need in his view to even know if there is a deficiency or not. Telling him I take 1000 a day on all other days I'm not taking the one-shot 10K pill made him smile. I've read the part of OMS on vitamin D. What I'll do is insist on having a blood test.

Cheers and thanx again
Did you elect to follow Seignalet diet because you can continue eating meat?
Meditation and exercise are key elements to OMS and I think they are key for anyone.
Hi veg,

Well, it's a combination of factors. One, a friend of mine has a neurologic disorder akin to MS that he controls well using the Seignalet (aka as hypotoxic) diet. Seignalet's studied over 2500 patients with a variety of health problems and apparently cutting on dairy and gluten (plus corn though) and not cooking meat too much (and opting for lean meat also) gave good results. Second, my dad is intolerant to gluten and so I figured I may have some genetics to worry about. Third, I have a bit of asthma and, again, Seignalet's diet showed good results with that ailment. So yes I feel less feustrated by keeping some meat in my diet, but Seignalet's diet is also pretty restrictive so I figure I'm doing my fair share dietwise. There are so many diets out there ...

I need to do more on the meditation side of things, that's for sure. I started to do cardiac coherence but I have to admit I haven't been very disciplined on that front. Exercisewise though, I'm really good. I run three times a week (a little more in the summer) and I've never been in better shape.

Thanx for your comment.
Dairy and wheat (the gluten trigger) I feel are key Asthma/Eczema irratants based on observations and reading.
The meat thing I don't do.
Meditaton why not start simple look at following your breathing.
Good luck with what you are doing.
Ivmo do you have to get your neuro to do the vitD test? Can your GP do it or better still get it done yourself? In NZ you can go to the lab and get tests done without a doc's order. Our vitD test costs us $56 regardless of who does it.

It is just not logical to supplement without knowing if there is a deficiency to start with. The test will help you to know how much to take. If you have to get your neuro to do it then I would insist on the test

this is an excellent reference.

http://www.overcomingmultiplesclerosis. ... 50nmol--L/
Dx 1992 OMS 25-2-09
Hi ivmo,
When I was diagnosed, it took me longer to find OMS than to get started on Copaxone. I can't say if I would have chosen not to take a med because, at the time I started it, I didn't know there was an alternative. When I was selecting a med, I had it down to two choices: Copaxone and Tecfidera. Copaxone has the fewest side effects but it is an injectable. Tecfidera has some side effects I didn't want to experience and is an oral. I have a friend who has MS (Dx about 2 months after me so we were introduced by a common friend) and she takes Tecfidera with no side effects after getting through the first couple of months. We both are doing the OMS program as well. We are both doing well.
My goal is to let go of the med when I feel that the disease is stable (quiet) so there is no reason to take the med. One thing that calms me on the inside is that we do have choices with what we do to help keep ourselves well. I have a friend with RA and she has eliminated corn and red meat and takes Vit D and Omega 3. Sounds similar to some of the choices you are making.
These are my experiences. Hope it may be helpful.
@kashu : darn right ! I asked the nurse in charge of the SP clinic my neuro works at yesterday. I won't give them a lot of time before I decide to pay for it myself. GP isn't much of an option, since it's so effing hard to get a hold of them here. At any rate, I totally agree giving supplements without knowing if there is a deficiencey to begin with is weird, to say the least. It seems to me rather odd that a scientist would not want to know before giving supplements, but I think he has to do with tough money constraints so he probably figures "what the heck let's supplement anyway". Sad, but that's the situation here.

Another thing about getting the neuro in the loop is that I thought *maybe* he would be willing to follow me on that bandwagon or refer me to other neuros he might know will start by making sure vit d levels are fine before going with the heavy duty medicine (if that is at all possible in my neck of the woods). I'm realistic though. Odds are all neuros out here don't bother with vit D, but I have to give it a try.

I have a tough decision to make and I won't do it before making sure I can rule out vit D low levels (which I'm probably quite subject to since I'm the type to hide from the sun). This and taking flaxseed oil as Veg mentioned above will be my next step. If (and when) I get another relapse while being sure my vit D levels are OK (thank for the reference ! I was kind of unsure what the concentration should be from the OMS section on vit D) and that I get that Omega-3 boost through flaxseed oil, then I will decide on a medication.

@catgirl : thanx for your input. I don't know how to feel when you say "My goal is to let go of the med when I feel that the disease is stable (quiet) so there is no reason to take the med." Can one let go of medecine once started ? I really hope so. The nurse here told me that "naive" patients, i.e. those who never had medication for MS before, show a better response to Tecfidera than non-naive patients. I understand you didn't know about OMS before deciding on a medication so I'm definitely not blaming you on your decision (which I may take sooner or later too ...) but for me I will try to avoid becoming non-naive until I'm sure the "obvious" first-line treatments (vit D and flaxseed) have shown their inefficiency. If I do have to choose, it'll be between Copaxone and Tecfidera. Like you (I suppose) I feel better about Copaxone because it seems to be much less plagued with side effects than the interferons, but the darn injection (not the injection per se in my case but rather the hassle of having to bring my doses with me in a refrigerated compartment and all that) bugs me.

Thanx all for sharing your experiences and feelings. It helps, really.
There is more to drugs than taking them I think, could also consider what if I were to stop are there any rebound issues I should also know about to help with choosing which one.
Vit d and flax oil is half the story, the other half is exercise and meditation. Diet goes without saying.
12 posts Page 1 of 2

Who is online

Users browsing this forum: No registered users and 3 guests