This Is MS Multiple Sclerosis Community: Knowledge & Support

Can one of the more medically minded amoung us tell what (if any) link there is between the above three named things in the title.

Emma has CCSVI and has been treated, whilst reading about various suplements I've started reading details of low B12 and Folic acids.

Emma mentioned her father has a three montlhy shot for B12 - made sense we get her tested.

Blood tests come back and Emma is below average in B12 and way below average in Folates.

Having read what the action of these two combined vitamins do (help form myelin sheath, help with endothelial function) along with the symptoms of pernicious anemia there seems to be quite some crossover.

Could CCSVI be associated to a deficiency in vitamins such as these, the side effect of which could aggaravate MS symptoms?

I can't seem to get a straight answer to these questions, but there seem to be so many links it's worth asking.

Also of interest is the level of B12 that is considered normal having been doubled to 500 in Japan.

Supplements appear to not be a great source of B12 as the body finds it difficult to absorb, so Emma is getting 5 shots over the next 5 weeks along with daily 5mg Folic acid tablets and we're then taking another blood test for her.

Initial reaction after the first shot only - huge increase in energey levels - really noticeable increases - she's up till midnight where as she was generally worn our by 9pm.

So get tested and see what your levels are.

Is there a link to CCSVI? I have no idea, I'm hoping some of the far more medically minded posters could expand on this please.

When I was first diagnosed with MS, some months after the birth of my second child, I tried sublingual B12. It's the only supplement where I felt I could feel an improvement from taking it. It may have been the timing too; I was probably depleted from first the pregnancy and then the MS relapse that led to diagnosis.

I do not know the science behind it but find that factoid about the Japanese having higher levels of B12 to be interesting. Not much MS in Japan.

about 5 yrs. ago a neuro. found i had mthfr "a genetic factor that makes me prone to heart attack, stroke and blood clotting". he prescribed folic acid and asparin once a day. i also have low b12 and take a shot.

the mthfr would make the blood thicker and thick blood plays a roll in ms like symptoms yet hugh's syndrome "sticky blood" seems to be down played. but while on the blood thinners i felt a little better. yet, to get the dr.'s i deal with to really address this is like peeing in the ocean and waiting for a flood. so i take natural stuff in hopes it helps.

when i wanted to get checked for pernicious anemia i had a time because i was not anemic but finally i found a doc to do it and i was low-not real low but enough to warrant the shot. which does help my energy.

being that folic acid is used for mthfr and the b12 for energy etc. i do feel our levels of vitamins and minerals are ignored too much by mainstream. with ccsvi and the vit. d thing it seems to me it could play a big roll in this puzzle. and a puzzle it is and i guess a lot of it is up to us to try to fit the pieces together.

yet with our depleted food chain and most of our depleted pocket books and depleted energy this is sometimes something not completely dooable.

I don't think I expalined that bit very well.

The Japanese decided anything under 500 was defecient, as opposed to most of the western world rating this somewhere between 250-300.

There is a low incidence of MS in Japan, also there are very low incidences of Dementia and Alzheimers which coincide with the increase of B12 base levels.

I feel it's another avenue that requires exploration.

I've *read* that there isn't one MS symptom that cannot also be explained by a B-12 defficiency. I've been taking B-12 shots for 20 years as my terminal illeum (part of small bowel connecting to large bowel) was removed and consequently absorbing B12 was no longer possible through normal digestion. Since MS onset in '03 I've needed B12 shot every 2-3 weeks or I crash - pronounced fatigue. Doctors always say that my B12 levels are sky-high but I just keep doing what I feel works. I'm not overly keen taking too much B12, as thiomersal, a mercury preservative is used in my liquid B12 supplement/injectable and in many/most vaccines as I understand it. I think we still know very little and my bet is that I have an absorption issue. I'd like to hear what the resident white coat wannabes think. Or even real white coats for that matter.

http://en.wikipedia.org/wiki/Thiomersal

That's where I am, there appears to be little/no research into the B12 - MS link if there is in fact one.

Has anything ever been undertaken or is this simply another subject which medicine doesn't understand/no money in it etc.

Any Doc's on here want to give us an insight please?

although this doesnt add any scientific value, there is/was a doctor in a place close to where I come from (Horden, Co. Durham) who was prescribing B12 to his MS patients. The documented case which I read, concerned a woman who regained walking ability after spending years in a wheelchair, after reading the case I initially put it down to a mis-diagnosis of sorts, but maybe there is more to it. Im also low in B12..400 is the level Im at....

edited as I found the link....
http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1774

fyi - I took the Schilling Test and did not test positive for pernicious anemia. Some might consider taking . . .

http://en.wikipedia.org/wiki/Schilling_test

PN

I came across Dr Chandy's website - it does make interesting reading. It's partly what put me on this thought trail.

I've asked a couple of Doctors I know about B12 and there really is very little knowledge about it other than the basics.

It makes you realise how little medicine actually understands about the human body.

Emmas B12 was at 234 - with a UK recommended level at 244...just seems low compared to what's considered normal elsewhere.

I did read up about this, it seems to becoming a little redundant now as most Docs simply give some B12 jabs and if you feel better - theres your answer.

It seems a course of 10 jabs is the magic number, Emma has been given a course of 5 (probably becasue that's how the vials come packaged!) I'll be interested to see here blood results in 8 weeks time.

Hi EJC-
When I wrote up the Endothelial Health program in '08 and shared it online, the premise was that there were many factors creating to the break in the blood brain barrier in pwMS. I looked at environmental issues that might create endothelial dysfunction, or a breakdown of the lining of our blood vessels. I hypothesized that this was why my husband had high liver enzymes, high coagulation numbers and petechiae and jaundice on his body, while he had his first MS flare. I believed that the breakdown of his vessels was systemic.

One of the factors I researched was low vitamin B serum levels (which he had also) creating high homocysteine levels in the blood, causing a breakdown of the endothelium and leading to a myraid of vascular problems. And vitamin B and B12 supplementation improves this vascular condition. Hope that provides some connection.

The research is based on a real white coat, Dr. John Cooke at Stanford, and his book The Cardiovascular Cure, although the connection to MS was just mine, a wanna-be white coat, actually...just someone who wanted to help her husband heal.
Here's the full protocol, with links to the research papers cited:
http://www.ccsvi.org/index.php/helping- ... ial-health

cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Splendid, I'll have a good read of that.

Thanks Cheer.