frustrated after visit to neuros - I'm newbie

[vilnietis]

Hello everyone,

first post, however it won't be nice introduction. So I have been to neuro today and decided to quit rebif after 5 month. I had such big pressure from neuros after just saying that. At one moment I was lost and didn't knew what to do. Right away after diagnosis I was told that my prognosis are optimistic and my MS is not serious. I didn't believed, because I had 34 lesions on my spine. They didn't tell me about my brain MRI, even today I asked and they said "they don't know really". What a hell? Today of course they said that my condition is very serious! isn't it amazing?
Why I quit REBIF? I just don't believe that interferon will help in long run. My initial symptoms are motor - both hands and legs were affected. Now feeling just great, 100% mobile, feel strong.
Anyway, great forum, great ideas and I'm trying to setup my regimen. Started of course from vitamin D, diet, B complex.

[ElliotB]

Welcome and glad to hear you are doing well!!

What made you decide to quit your medication (why do you think it won't help in the long run)? Did you switch to another?

[vilnietis]

To my understanding grey matter what matters. I didn't find any study showing positive impact on grey matter then using interferon. Besides, who knows what REBIF really does inside our body? Attacks are scary, so is progression. Another point - I cannot chose DMD so easily, REBIF or nothing
My simplified view: some of us with MS finds the real cause and minimizes progression. If MS is advancing very fast, odds are against us. I'm thinking to try vitamin D megadoses. I know jimmylegs is pessimistic about it (hard not to notice jimmylegs here ), but lots of anecdotal success stories in Brazil. I did all tests, all were perfect except my vit. d. Right after diagnosis it was 53.5 nmol/l. Now it's > 200 after 70k IU per week. I know about magnesium and K2, so after getting supplements will try to increase up to 1000 IU/1 kg per day. Will see how it goes.

BTW, I somewhere read about Ca 24 test and how it is calculated and cannot find that post. Here are my results:
1.96 mmol/L
Normal range:
2.5-7.5mmol/24h
Should I multiple by urine volume (2.5 l)? Or my result is not WNR?

Waiting for PTH also.

[EricDrake]

Hi, I am in a similar situation just had my last MRI ~1 week ago and I had 9 lesion in the spine with 5 active (on the last mri i had one active in the brain thats no longer active and no new brain lesions atleast). I am also going to check my B12 and D vitamin levels (I have been taking 1000-2000 iu daily but it didnt help me to avoid this 5 active lesion so thats why I decided to check my level aswell who knows maybe it is way too low even this way if I have absorbation issues. I was also afraid from that amount of lesions in my spine but so far i just have tingling in my left hand and minor lhermitte signe so I was quite lucky. Also I think I will start tecfidera in september, I think the whole point of these DMDs even if they can't really slow the proression is that it still helps to avoid new lesions, probably the D vitamin is also capable of that (however I dont really trust the Coimbra stuff he is really weird for me) so I will take it aswell to double my chances.

[lyndacarol]

Hi, I am in a similar situation just had my last MRI ~1 week ago and I had 9 lesion in the spine with 5 active (on the last mri i had one active in the brain thats no longer active and no new brain lesions atleast). I am also going to check my B12 and D vitamin levels (I have been taking 1000-2000 iu daily but it didnt help me to avoid this 5 active lesion so thats why I decided to check my level aswell who knows maybe it is way too low even this way if I have absorbation issues. I was also afraid from that amount of lesions in my spine but so far i just have tingling in my left hand and minor lhermitte signe so I was quite lucky. Also I think I will start tecfidera in september, I think the whole point of these DMDs even if they can't really slow the proression is that it still helps to avoid new lesions, probably the D vitamin is also capable of that (however I dont really trust the Coimbra stuff he is really weird for me) so I will take it aswell to double my chances.

EricDrake, I am a little confused… If you are going to check your B12 after supplementation, the test results will be unreliable and misleading. (Did you mean 1000-2000 µg of B12 daily? Or did you mean 1000-2000 IU of vitamin D3 daily?)

If you're going to check your B12, I suggest you request a serum homocysteine test AND a serum or urinary methylmalonic acid test. These two test results will be high if your B12 level is low. (The homocysteine test is good for everyone anyway; it is the best indicator of the risk of heart disease.)

From page 156 of What's Wrong with My Child? by Sally M. Pacholok, RN, BSN and Jeffrey J. Stuart, D.O.:

Costs (approximate) of commonly used blood tests for B12 deficiency (if not covered by insurance):

Serum B12 (outdated test)… $50
HoloTc (newer, more reliable)… $118
Serum homocysteine… $147
Methylmalonic acid test (serum or urinary form)… $150


By the way, neurological lesions, tingling in the hands/feet, even l'Hermitte's sign are symptoms of a possible B12 deficiency (as you probably already know).

[EricDrake]

Hi lyndacarol,

I have stopped with both supplements 4 day ago and I will have the blood test today, I dont know if it is enough but I hope so.I meant 1000-2000 IU of D3 vitamin, for b12 I take a B vitamin complex that contains 100mg b1 200mg b6 and 0.2mg b12. Unfortunately I could not find any place in my country for HoloTc test so I have to give a chance to the serum test.

[vilnietis]

EricDrakem, are you sure D3 2000 IU is enough? Have you checked your level?

Here is my vitamin D progress:
Date 2015-03-04
25-OH Vitaminas D 53.5* 75,00-100,00 nmol/l (deficient)

Started taking vitamin D3 10 000 IU.

Date 2015-05-26
25-OH Vitaminas D 175.00* 75.00-100.00 nmol/l (surpass normal range)

[EricDrake]

EricDrakem, are you sure D3 2000 IU is enough? Have you checked your level?

Here is my vitamin D progress:
Date 2015-03-04
25-OH Vitaminas D 53.5* 75,00-100,00 nmol/l (deficient)

Started taking vitamin D3 10 000 IU.

Date 2015-05-26
25-OH Vitaminas D 175.00* 75.00-100.00 nmol/l (surpass normal range)

Hi vilneitis, I have just received my results, it is 114 nmol/l after I have been taking 1000-2000 UI daily for ~3 month (I have stopped d3 supplementation 4 days before the bloodtest). I dont know if it is enough or lot because each site on the internet says different ranges, so hard to find out, actually on my result paper upper reference range was 500 which is really high I think.

[vilnietis]

I'm targeting to keep at least 200 nmol/l level, read that PwMS are in remission if D is high enough. 6 months after diagnosis and feeling better than ever.
And I will see that what dosage neuro will prescribe for following Coimbra's protocol.

[EricDrake]

I'm targeting to keep at least 200 nmol/l level, read that PwMS are in remission if D is high enough. 6 months after diagnosis and feeling better than ever.
And I will see that what dosage neuro will prescribe for following Coimbra's protocol.

Happy to hear that you are feeling so good. I will also increase my limit to 4000 IU/day I am also targeting this 200nmol/l you have, that seems to be still in the upper safe range, Coimbra is too extreme for me, until he does not publish anything to prove that his treatment is working, Did you find a neuro who is willing to follow his treatment?

[vilnietis]

Here in Lithuania, no. I was told that MS is being treated as in all western countries and other options are not considered. Neuros confirmed that Vitamin D is important and even prescribes in megadoses to other patients. Funny part, megadose according neuros is 1000 IU. I just decided not to argue after hearing that. Neuros did a great job with my diagnosis, but e. g. MRI explanations might have been useful. I took couple day ago brain MRI and have doubts is it RRMS or PPMS. Some brain atrophy in my eyes.
EricDrake, here is a page listing all dr. following protocol:

https://mscurevitamind.wordpress.com/do ... e-protocol