Looking for advice

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Looking for advice

Postby sablesable » Sat Aug 11, 2018 9:57 am

Hi there!

I'm new to the forum and just wanted to generally introduce myself as well as give me history and ask for some opinions.

Im 30f now but I had my first flare at age 19. Presented with left sided numbness from chest down to toes. It lasted for about 2 months, 3 months until full recovery. About 1.5 years later I had optic neuritis in left eye which lasted for about 1.5 months. At this point I was diagnosed w rrms. I had 3 lesions showing on mri. Between then and until I was 28 I had no relapses. I also have never been on any DMDs. I take vitamin D daily but that is all.

At 28 I had optic neuritis which cleared up after about 1 week (perhaps pseudo exacerbation). No new lesions appeared on my MRI.

I'm now 30 and am currently in my worst relapse. Left sided numbness from my chest down (although this time not effecting my left arm/hand). This started about 2 weeks ago. 1 week ago I began noticing my right hand was feeling weak and now I have very little movement in my hand and right leg also feels weak. No changes in the left numbness.

My question is - based on what I've said here, would you consider my experiences to be relatively mild? I have felt very fortunate over the years not to have had many relapses but I realize this is not necessarily an indication of my future prognosis. Does only 3 lesions seem to indicate a good prognosis for my future? I have always been told that the sensory issues I've experienced up until now were a good indicator that my disease course looked favourable. But now with having some motor function issues, I have some new concerns.

Given that I'm already over 2 weeks into this relapse, would a steroid treatment still benefit me?

I'm also wondering if anyone can give me any clarity on how many people/percentage of people generally move from RRMS into SPMS? I have read 35% of people do and I've also read 90%... I know it will vary but I just can't find any straight answers on this.

I'm meeting with my neurologist on Tuesday but I thought I would post here hoping to talk to some people who would understand until then.

Thanks so much
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Re: Looking for advice

Postby jimmylegs » Sat Aug 11, 2018 11:36 am

hi ss :) welcome to TiMS

i'm 12 yrs post dx, no DMDs, and have generally been well except when nutrients are out of whack. when i was diagnosed, the rule of thumb was at least 10 lesions visible on MRI, so i am a bit surprised you were dxd with only 3!

i had the first of what i'm sure my docs will term a relapse earlier this year. they never gave steroids or had much input at all actually, except choose a drug. i did all the recovery work alone - so glad i have full text access to lots of research papers!!

i got some levels tested, and of those my d3 and zinc were garbage. i topped those two up and have been more diligent with all of the nutrients of concern for ms patients since. i'm supposed to be retested in the fall at which point i expect the neuro and GP to apply more pressure re choosing a DMD. yay! :?

i'm curious how much d3 you take daily and whether you are interested in pursuing inquiry and possible action related to other nutrients? i wonder if a broader spectrum nutritional approach might potentially help with any of your day to day symptoms.

i don't know much about stats re progression from rrms to spms, i'm afraid. clarity is thin on the ground with ms, but i'm pretty sure others will chime in to try to help fill that info gap to whatever extent they can :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Looking for advice

Postby sablesable » Sat Aug 11, 2018 1:47 pm

jimmylegs wrote:hi ss :) welcome to TiMS

i'm 12 yrs post dx, no DMDs, and have generally been well except when nutrients are out of whack. when i was diagnosed, the rule of thumb was at least 10 lesions visible on MRI, so i am a bit surprised you were dxd with only 3!

i had the first of what i'm sure my docs will term a relapse earlier this year. they never gave steroids or had much input at all actually, except choose a drug. i did all the recovery work alone - so glad i have full text access to lots of research papers!!

i got some levels tested, and of those my d3 and zinc were garbage. i topped those two up and have been more diligent with all of the nutrients of concern for ms patients since. i'm supposed to be retested in the fall at which point i expect the neuro and GP to apply more pressure re choosing a DMD. yay! :?

i'm curious how much d3 you take daily and whether you are interested in pursuing inquiry and possible action related to other nutrients? i wonder if a broader spectrum nutritional approach might potentially help with any of your day to day symptoms.

i don't know much about stats re progression from rrms to spms, i'm afraid. clarity is thin on the ground with ms, but i'm pretty sure others will chime in to try to help fill that info gap to whatever extent they can :)



Hi Jimmylegs,

thank you for your response! I have been lurking here for a while and your posts have been really helpful :)

This may be a bit ignorant but are Vitamin D & D3 the same (much to learn!)? I was previously taking 2000 IUs of Vitamin D but upped it to 4000 IUs since the beginning of this relapse (however to do honest I have no idea what is recommended for people with MS and was going to ask my neurologist about this next week).

I'm definitely interested in getting my nutritional levels tested. I'm unsure if I will have to do this privately or ask my neurologist/family doctor to refer me (I'm in Canada) - but I'm going to look into this and will for sure get back to you. I am very interested in exploring a nutritional approach. Since this relapse began, I've also added B12 (1000 IU) and Omega 3 (2000 mg EPA/100 mg DHA), but those are all new additions!

Thanks again
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Re: Looking for advice

Postby ElliotB » Sat Aug 11, 2018 2:06 pm

Welcome to TIMS, hope you recover from your relapse quickly.

"have no idea what is recommended for people with MS and was going to ask my neurologist about this next week)"

Ultimately it is not the amount that you take that is important but rather the level of D within your body. Blood work will show give you that. It is important to know what number you are at. Everyone seems to react differently. You should do some research and decide where you want you D level to be. The 'normal' range for D is a large one. There are many opinions as to what range is best, but ultimately there is no consensus. Some people do well with low doses, Some take mega doses. It is difficult to overdose on vitamin D, but you should probably limit calcium intake if taking higher dosages.

There is a lot of info on vitamin D on this site, search for "Coimbra".
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Re: Looking for advice

Postby jimmylegs » Sat Aug 11, 2018 3:03 pm

hi ss no probs, and happy to help!

yes vit D and D3 are the same thing - the latter is just a more specific term than the former. there are previtamin D, vit D2, vit D3, various circulating D2 and D3 metabolites, and even vit D4 that are either part of natural cutaneous biosynthesis or from various dietary and/or supplemental sources.

as a supplement i expect your 4000 IU of vit D is vit D3 aka cholecalciferol - an animal source form and therefore more bioavailable to you. if it's D2, that's a plant form called ergocalciferol, and it's less efficient as your body must convert it to D3 before it's properly bioavailable to you.

2000 IU of D3 daily is normally good for average joe, provided essential cofactors are present in sufficient levels to maximize absorption and utilization. my recent crap level (50 nmol/l) and a friend who's dealing with cancer (her level was a bit worse) prompted both our docs to advise 4000IU per day which is the daily upper limit (for average joe healthy person mind you) per health canada for no adverse effects long term. (edit: in neither case were appropriate cofactors suggested. in her case their use was at least approved upon review by pharmacist)

because i know what i'm doing, i had both my friend and myself complete a 10 day megadose regimen, 50,000K IU per day for 10 days complete with lots of supporting essential nutrient cofactors.

from personal xp i know that the 50K IU D3 x 10 days, which is supposed to achieve a +50 nmol/l boost in serum, can result in more like +70 nmol/l boost for me, even when cofactor status is crap.
when my cofactor status is good, 50K IU/d for only 8 days can boost serum D3 levels by +170 nmol/l.

now i'm back to a normal 4K IU / d regimen (and cofactors!) for a while until i can get retested. i'm waiting for a bit beforehand, to let that most recent megadose settle in.
i won't do any more high dosing until i have a clear sense of my dose response via that test result.

coimbra's stuff is premised on some people needing high D3 intakes. from what i've seen the idea is based on legit studies demonstrating high variability in serum response to a given intake from sun or oral sources. as with much research, c's approach also fails to properly assess cofactor interactions. his work has not been properly submitted to an academic journal for peer review. if you go looking for published coimbra studies you'll likely find at least one scenario in which other scientists question his research methods. re high dose d3 research specifically, you will find at best a handful of case studies (by others) suggesting safety of long term high dose D3 intakes. many studies with more participants consider 3 to 6 months 'long term' - i don't. particularly when these studies don't have a clear sense of what to look for in terms of consequences of long term impacts, their conclusions should perhaps be taken with a large grain of salt. this situation is a source of ongoing debate here at TiMS.

as elliot suggests, it is indeed the serum 25(OH)vitamin D3 level that matters more than the daily dose. if your serum d3 levels don't hit a satisfactory target via 2000IU/d, or 4000IU/d, or a short term high dose boost, it's time to look carefully at cofactor status. (this is something that is not done well in general, to date). piling higher and higher d3 intakes into a system with obviously poor absorption is just short sighted, both economically and environmentally.

in canada, the private testing options can be a bit of a headache. as i'm sure you know, the public avenue varies province to province. i have most xp with ontario's system. some tests are covered and others aren't. you can jump through some hoops to get serum d3 covered, but if that's not an option, for the most part the fees don't break the bank. if the family doc won't order the test then you go to a naturopath and tell them what you want. that adds another chunk to the bill since you're paying for the ND's time. there's also the chore of resisting sales pitches for expensive and unnecessary extras.

i wonder if you have access to existing bloodwork results, and if so it would be good to have the last results for serum ferritin, serum vit b12, and serum vit d3 if available. serum ferritin is the most likely, since it's built in to standard bloodwork for any average joe, never mind an ms patient.

the 'short' list of less standard nutritional tests that would be of interest for you as an ms patient include:

serum b12
serum d3
serum magnesium (NOT rbc magnesium - it costs more and is unnecessary)
serum zinc
serum copper

there are more, but if each test ended up running you about $30 (*some* should be covered mind you), 5 tests is already getting up there. good to hear you've added b12 and omega 3 in the meantime!

the other way to conduct investigations is via my old fave the three day diet diary (including all foods fluids meds and supplements). that can help point up any nutritional gaps and/or problematic combinations. that's that for now!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Looking for advice

Postby sablesable » Mon Aug 13, 2018 6:12 am

Thank you jimmylegs! You've given me a lot to think about. I am anxiously awaiting my appointment tomorrow with my neurologist and am definitely going to discuss this with her and see if I can get my hands on previous bloodwork/get some updated. I am in ontario too, by the way! Toronto.

I actually ended up going to emerge on Saturday evening because I was just at my wit's end and feeling a bit panicked. The weakness I have in my right hand is now very apparent on my entire right side of my body. When it spread to the right side of my face, I became a bit overwhelmed. In my leg, I would describe it as feeling like walking through water. There was no neurologist on call that evening but they gave me a prescription for 1250g of prednisone. I've never taken steroids before and I always thought it would be delivered by IV. I decided to not fill the prescription and just wait to see my neurologist.

Is weakness a typical symptom in RRMS? I am trying not to worry myself into a panic but I thought this was more indicative of SPMS/PPMS... Maybe I would be a bit calmed if anyone out there has experienced this and then had a remission/near full recovery.

Last night I woke up feeling like I couldn't breathe. I would try to take a deep breath and just couldn't fill my lungs. It's almost like my chest felt weak. I've never experienced MS hug before but I wonder if that's what it was or if it was just a run of the mill panic attack.

Anyway, thanks for listening :)
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Re: Looking for advice

Postby jimmylegs » Mon Aug 13, 2018 8:17 am

hi ss (neighbour! ;) ) sorry to hear you had a rough weekend. i've never taken oral prednisone or steroids of any kind (well except vit D3), so no helpful input there i'm afraid.

it should be easy to obtain a copy of your most recent bloodwork and see what might be relevant and useful. if not, there's a process in place in ontario for making the request and soon individual bloodwork will be readily available online. i recently paid the $20 to access my dynacare results for a year but i expect that the provincial system will be covered.

if you don't get buy in from the neuro re checking any other levels mentioned above, please do not give up. if not the neuro, try your GP. if you don't get support from the GP, see if you have any coverage for a naturopath's time (i happened to have x amount per year under a student plan). if you don't have that coverage, you could inquire re the cost of a naturopath visit to write a requisition for any or all of the 5 tests listed above. and finally, if *none* of that pans out, and even if it does, i strongly recommend starting a journal of all intakes through the day for at least three days (two at work one at home). that helps give a sense of a person's average week.

i am no diagnostician, and there are so many factors that could be influencing your current xp that i'd feel out of my depth commenting on some of what you report. i can say that i have experienced and recovered from both weakness and from shortness of breath and i have a solid idea of the origins of both problems *in my case*.

here are the things i can speak to from experience. when i was b12 deficient, i was so weak i couldn't squeeze shampoo out of the bottle without using both hands. you can envision how much fun that was lol.

when my magnesium was depleted (in hindsight it had been low for years and i made it worse taking 4000IU of d3 long term without appropriate cofactors) i definitely had shortness of breath. that *exact* feeling of not being able to fill the lungs. it was a long and nasty learning curve finding the right magnesium product for me, and the appropriate daily intake. but once you have it right, if your shortness of breath is indeed muscle (esp diaphragm) spasticity from mag depletion secondary to supplemental d3, then once you start on repletion things should clear right up for you in a matter of hours - maybe a couple of days.

i'll save you the learning curve headache and recommend 7-10 mg/kg body weight of magnesium daily (that's based on published research and may go above and beyond health canada recommendations on a case by case basis). get as much as poss from diet and if needed, top up with a quality soluble absorbable supplemental form like magnesium glycinate. in contrast, high dose magnesium oxide goes right through you - even though it did help me in early days, the strongly laxative side effect was an unwelcome hurdle.

re panic, i think it's all part of the same package. i had always been a high anxiety person right up until i started really working on magnesium status. no longer :)

oh i just remembered, you lucky canadian you, that you can get free magnesium samples delivered to you (i don't like mag pop myself, but if you would, why not try it out) http://www.trymagpop.ca/#free-sample
this product is not quite as good quality in terms of absorption, but hey another free sample what the heck http://naturalvitality.com/free-calm-samples/

good luck with tomorrow's appointment! and maybe consider taking a little break from the d3, to see if that helps clear up your breathing issues :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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