B12 deficiency and MS

[xyz011]

I recent got the "Could it be B12" book. I first read the chapter about B12 and MS. I have been diasnosed with B12 def. AND one of two neurologist insist on making sure I dont have MS as well due to abnormal MRI that shows demylating in my brains white matter. I read in the book that there my be a relationship. Some people with low B12 get MS, but not all MS patients have low B12. Next month I am having another MRI with contrast this time and a lumbar puncture to extract spinal fluid. Just wondering if anyone has MS as well or similar experience.

[Gambit62 Administrator]

there are similarites between the way MS and B12 deficiency work. This article suggests looking for causal links - 2005 - but not sure what further studies may have been done and what the results of those studies may have been - there are a number of articles listed to the right but most of those listed as similar seem to have earlier dates implying that there hasn't been muchfollow up.

ncbi.nlm.nih.gov/pubmed/158...

I don't have MS but do have a family friend who has MS - she was trialed on B12 a number of years ago but it didn't actually do anything for her, though the trial was oral and I think the evidence is that shots seem to be more effective (though I may be mis-remembering that.

If you haven't done already may be worth posting on one of the forums dealing with MS - sure there must be some.

[knackersyard]

B12 certainly could be part of the issue, but so could Yeast (Candida), which infests your brain, along with your gut & the rest of your body.

If I were you I'd go on a strict alkalising diet. Get a juicer. Lots of mostly green organic raw veg. No processed food, no wheat or other grains, no sugar, no alcohol. Plus (look away now if you're squeamish) daily enemas. Coffee enemas, Bicarb Soda enemas. I know that sounds drastic, but your health must be in a bad way if it's looking like MS!!!

Plus your B12 jabs of course. If you stuck to that for the 4 weeks you might be a different person for your next MRI scan.

Good luck!

[Gambit62 Administrator in reply to knackersyard]

Not sure what you mean by candida infesting the brain - would be very surprised if anything as large as a yeast was able to cross the brain blood barrier (BBB). I did find this article referring to a pathogen created by candida which can in rare instances cross the BBB resulting in meningitis - but this would appear to be very rare and only seems to occur where the immune system is known to be weak

ncbi.nlm.nih.gov/pmc/articl...

candida overgrowth can cause mental fog and slowness but this seems to stem from the fact that yeasts tend to interact with sugars to produce alcohol, raising blood alcohol levels.

[NJMommy]

I was in your situation a few years ago but reversed. My neuro symptoms were very bad and similar to MS. An MRI of the head and neck with and without contrast showed six lesions on my spinal cord and a few in my brain as well. The neurologist thought for sure it was MS, but I thank god everyday that he's is thorough and open to conversation as well. I walked around for a few weeks thinking it was MS waiting for the spinal tap. While I was waiting I ran PA by him as a possibility. All my blood work came back the day I had my spinal tap. He diagnosed me with PA but also said he wasn't going to officially drop MS as a possibility until the tests came back. Luckily, MS was ruled out. I have heard that due to demyelination MS patients can benefit from b12. Before you accept any diagnosis make sure that doctors have ruled out every other possibility. Good luck and feel better!!

[Marymary7 in reply to NJMommy]

@NJMommy ...My brother was told 20 years ago he had M.S. I don't know if they tested for b12. Retired Dr. C has spoken to us and thinks its sub acute degeneration of the spinal cord due to the untreated b12 deficiency.

We are self injecting Methyl b12, every other day if I am not working, I have to do it as my brothers one side is withered and he can't use one hand or leg....horrifying to think this could all be a vitamin deficiency. He loses heart that he is getting any better. I try to gee him up and say it's a slow thing to happen and to heal.

He can't have any b complex or folic yet as it causes him to have insomnia all through the night and therefore bad headaches and nausea.

He had plenty of scans, MMR's and was diagnosed by symtoms as he didn't want a lumber puncture as it was very painful when he had one during Meningitis....sadly he refused. Lesions on the spine and one on the brain. I'm coming into this late as he was married and I didn't go to the appointments....so trying everything a bit blind now but I have seen the low b12 tests and he was only given folic acid which disguised things.... so sad for my brother.

His Doctor is very resistant to going down this route and was very horrible to us. He said he didn't have a b12 problem just because our father had Pernicious anaemia and he didn't know why nothing was done when the B12 was down to 153 many years ago and low scores since.

I have Sally's book too and read out bits to my brother as he can no longer concentrate to read and try to give him hope.

[NJMommy in reply to Marymary7]

I'm sorry he's been sick for so long. I as well have sub acute spinal cord degeneration. the day my symptoms peaked my GP sent me to the er fearing I had a slipped a disk in my neck and was in imminent danger or paralysis. With in the span of 4 hours I was cleared of a slipped disk but diagnosed with Guillian Barre with they ruled out. I was then diagnosed with ALS which after a few more hours was also ruled out. I was discharged with no diagnosis and an I'm sorry we can't help you and a referral to a neurologist. My symptoms came on so fast that my head was spinning. However thinking back I was suffering for at minimum of a year with symptoms that seemed unrelated I eachother. After starting b12 injections I realized it was all related to the PA. I was lucky that I didn't suffer an overly long period of time. After 2 1/2 years of treatment I have permanent nerve damage but feel better than I did. Please continue to inject your brother. When the CNS is involved and damaged, it can take years to heal. Folate is an integral component in metabolizing b12. Please have your brother's levels checked again along with c, iron, magnesium and potassium. They are all connected. You should also check his MMA and Homosistyne. If he is matabolizing b12 properly they will be normal. If not they will be very high.

I hope everything work out. Patience is important as is keeping a very close eye on his blood work.

[Marymary7 in reply to NJMommy]

Thanks for the reply NJMommy , I adapted my comment to you to a full blown post. See above. Doctor won't take blood tests for all the things you said sorry to say...he won't help my brother and he's the head honcho in the practice. We can't afford to take the tests privately at present, maybe in the future if finances improve.

Thanks for advice, this is a great resource.

[NJMommy in reply to Marymary7]

I'm so sorry to hear that he's being treated so poorly, it's such a shame. I'm assuming you're in the UK. There have been other members of this site that have posted links to the guidelines regarding treatments. Things are different here so unfortunately I can't offer any help. Can you find a new doctor?

[xyz011 in reply to NJMommy]

Sounds lime good advice from what I know.

[xyz011 in reply to Marymary7]

Dear lord, new doctor needed!

[CathyCav]

Hi. I am a 50 yr old female. My story is just like yours. Last year at this time, I had, along with much other MS testing, my spinal tap at the MS Center. I too had white matter lesions in brain, neuro/MS symptoms like crazy, and a VERY low B-12, (for the second time in a few years! Did B-12 shots for it) Spinal tap came back negative (as had other tests, except for the B-12 again) and my MS Neurologist said he could rule out MS at that time. He said he was pretty sure it was the low B-12 causing my probs and I needed to go back to the shots. He explained that because this has happened before, that my body most likely has an issue where it doesn't absorb and store B-12 and basically 'spits it out' of me and that pills don't work for this type of B-12 deficiency. I started giving myself the B-12 shots again and sure enough, the symptoms are much, much better!!! Every month, I can tell when it is getting closer to my day to give myself the shot because the symptoms start up again! I also have Lupus and Fibro and OA, so while sometimes it is hard to determine which disease is causing what symptoms lol the 'nerve issues' that happen from the B-12 prob is certainly identifiable from the others when it gets bad.

Good luck to you with it all, but yeah, it is probably the B-12!

[Benji76 in reply to CathyCav]

This is great to read. I am on the same track. 43 and awaiting spinal tap. Everything else same as you. I hope to god I have a neurologist who is able to reach the same conclusion. I have been self injecting monthly because I have found this is what I absolutely need. My doc is telling me not to. I hope the neuro advice will ultimately prove him wrong

[TAB100]

Yes, I was diagnosed with MS twenty years ago after MRI scan. Years after I had a lumber punch and it showed I had MS. About 18 months ago I was diagnosed with low b12 and large red blood cells!

[xyz011 in reply to TAB100]

B12 ne er checked early on with MS?

[TAB100 in reply to xyz011]

No, unfortunately. I had a lumber punch years later which showed it was MS..

[Moyna]

In 2008 I had an attack numbness weakness etc. Saw doctor said it was virus. I started taking multivitamins and I recovered. Then in 2011 saw a neuro because I started to notice foot-drop. Had MRI which showed lesions on the spinal cord brain was clear. LP was also negative for MS. Was told I had radiation myelopathy from cancer treatment I had 20 years previously.In 2012 I saw a different neuro. He said not radiation myelopathy but transverse myelitis, another LP and brain scan was normal. In 2014 I read about B12, went to a doctor in Wales and got B12 infusion plus daily shots. I then persuaded my neuro to let me have the B12 shots weekly on the NHS. Postive impact is that I am less tired and my symptoms have stopped getting progressively worse. I saw a new neuro in Jan. On MRI the neck lesions had gone BUT there were 2 small lesions on my brain. What he thinks that this all started with subacute degeneration of the cord in 2008 causing the lesions seen in 2011/12 BUT it caused MS to develop later. LP in 2016 showed bands for MS but LPs in 2011 and 2012 were clear.

[xyz011 in reply to Moyna]

What a whorl wind! I guess I will see, the entire process sounds crazy!