B12 deficiency and MS

New diagnosis and before diagnosis
1

Newbie: For the past 2 years I’ve been suffering from numbness, muscle spasms, vision problems, bowel and urinary problems, fatigue, and pain in lower limbs with periodical balance problems, and memory problems. As you can imagine I kept going to my GP with these maladies and he kept brushing me off with BS reasonings for my problems such as weigh and stress etc etc. Eventually, I had had enough so I would go about changing my GP while also asking him could he allow me to see a Neuro to which he agreed. I’ve had one appointment with this Neuro. He presumed that I had diabetic neuropathy, as I am also diabetic 2 with diet control while all my diabetic bloods have been normal since this dx. This neuro would then send me for tests to see if my outer nerves were someway damaged, to prove his theory; they were not.

My problem today, is that last week my GP phoned me to say that blood tests had come back to say that I had been dx B12 deficiency, and I was to come to the surgery for a B12 injection which to be honest has not helped though I have more injections weekly for the next 3 weeks then every 3 months yet to come. He also mentioned that I may have Pernicous Anaemia???

Well to say that I am confused is an understatement. Many MS patients apparently have B12 deficiency while some medical specialists out there believe that MS and B12 deficiency have a very, very, close relationship.

Example; Trials of MS sufferers.---- Kocer B Enqur S. AK F Yilmaz M-------PubMed.gov.

‘Patients with MS who had prolonged VEP and posterier tibial SEP P1 and P2 latiences also had lower vitamin B12 levels compared to patients with normal latiences. Thus we found a significant relationship between MS and vitamin B12 deficiency and also demonstrated a relationship between vitamin B12 deficiency VEP and posterior tibial SEP in MS’.

I will be seeing my Neuro in 2 weeks for my second appointment and as a consequence of my B12 deficiency could any-one kindly inform me if this neuro will ask for me to have further tests to rule out MS? If not should I insist on this? Furthermore If it turns out that is not MS, will the nerve damage that I have suffered over the past 2 years, be permanent due to my apparent lack of B12?

Thank You in advance as I would be very grateful for some answers to my queries as I am also overly stressed due to my confusional issues and need for answers.

2

Hi

I’m sorry to hear of your problems. It’s horrible when you just don’t feel yourself but no one can tell you why!

I don’t know about a link between MS and B12 deficiency, but I know that a B12 deficiency can mimic MS symptoms and cause a lot of neuro symptoms too. Which is why, if you are suffering neuro symptoms, a battery of blood tests is usually the first port of call.

If you only had the first B12 injection last week, I would say give it a bit more time. I’ve never had a B12 injection so don’t know how long it takes to work, but I would certainly give it a couple of weeks. You may have already seen this, but the good ol’ NHS normally gives good info on these things - Vitamin B12 or folate deficiency anaemia - Symptoms - NHS

I’m sorry I can’t asnwer more of your questions. Hopefully your neuro appointment in a couple of weeks will be productive

PG xx

3

Thank You PG, I will check out your link and maybe get back to you. God Bless.

P63. xoxo

4

Peter,

Do google ‘Could it be B12 - An Epidemic of Misdiagnosis’ - [l bought the books amazon] also Vitamin B12 deficiency MS. This might help you understand more about B12.

My GP will not give me the B12 injections - so l use the oral spray Boost B12.

You need to be your own expert Peter. The GP’s/Neuros have not come up with anything to help people with MS - in the 32yrs that l have had it. l was diagnosed after a MRI and Lumber Puncture.

The blood test for B12 that the GP does is very unreliable. Which you will understand better after reading the books.

5

There are quite a few of us on here who are known to be low in B12 and who get regular injections from the GP to top us up, but who do not have an obvious reason for the low B12 (pernicious anaemia, for instance, or being a strict vegan). As I understand it, they will be able to tell from further blood tests whether you have pernicious anaemia or whether your low B12 is just one of those things that happens for no discernable reason (like mine).

In my case, I found out about my low B12 in the way that many do - i.e. strange neuro symptoms, so B12 is one of the obvious things to test. Alas, it was MS that was causing the strange neuro symptoms, not the low B12, but I convince myself that keeping B12 levels topped up gives me the best chance of feeling as well and energetic as possible.

Alison