Neuropathic symptoms have moved from left to right

Both MS and B12D cause demyelination of the nerves. If left untreated too long, the damage to the myelin sheath also progresses to the axon. There is some thought that myelin sheath damage can be repaired; but once the axon is damaged, the nerve is dead.

Nerve repair is very slow. I have B12D and not MS. My nerve damage was initially in my right hip and maybe also in my brain. After get frequent enough B12 injections, Folic Acid, Vit D, Vit B6 and a daily multi-vitamin, I can see progress on the right side. It's been 5 years. The Brain fog is gone but the hip occasionally acts up, so there has probably been some permanent damage there.

Good luck with the diagnosis. I hope the MS is not a red herring. So many times, it seems B12D is misdiagnosed.

Thanks for the info on the nerve damage. I had not come across this in my research.

I did not realise the nerve damage could take years to repair. I think I read that permanent damage can occur if B12 treatment is delayed 6 months or more. Was your treatment delayed that long?

I don't think the MS is a red herring. The neurologist seems to know what she is doing. I guess this will become clearer when the MS specialists get involved.

One test for B12D is for elevated homocysteine and another is for methylmalonic acid. Either in blood or urine.

The serum B12 test is suspect. Here in the USA, some labs include a caveat that 10% of the population exhibits neurological symptoms when B12 results show under 400 pg/ml. The "normal" range is roughly around 200 to 900.

Was your B12 level tested before the B12 injections started? How about your folate level?

Before treatment I had the serum B12 test and the PA antibodies test. The PA antibodies was negative (but I think this is also not reliable!). I did not have the other B12 related tests. Doctor started B12 loading doses because serum B12 was below the reference range.

Before B12 injections my B12 was 159 ng/l (191-663) and my folate level was 8.9 (3.8 - 16). After the loading doses my B12 was 1683 ng/l (191-663). Can't find a folate level in these results. If they did one they did not include it in my copies.

In the blood tests done 2 months ago it is now 577 for B12 and 11.2 for folate.

So you had a definite B12D diagnosis.

Yes thank God. I was in a very bad way at that point and getting worse at a pace. I felt like my whole world was ending. When the Doc said you do not have PA my heart sank and I was preparing for an argument about starting injections anyway but his next words were "However you are B12 deficient and I am going to start you on loading doses this afternoon". The sense of relief was immense.

PA in the strict sense is an autoimmune response that stops you absorbing B12 - it isn't the only cause of malabsorption - far from it. I don't know if I have PA or just an absorption problem.

Also, studies have shown that about 20-25% of patients with MS respond very well to B12 treatment (now not clear if there was a suspicion that part of that was mis-diagnosis but from what I read it sounded as if it was a general thing as B12 along with B9 are essential to maintaining proper mylenisation of nerve cells - ie the sheath around nerve cells that insulates them so that signals pass through them properly, though think it really needs to be Methylcobalamin (tends to be administered orally) rather than the hydroxocobalamin that is used to treat B12 Deficiency in the UK

There is a chapter on it in 'Could it be B12?' - a friend of my parents has had MS for years (all the time I've known here and they were friends when I was born and I'm now in my 50s. She tried B12 in the past but unfortunately didn't respond.

Hi Kontrolla,

I'm terribly sorry to read you have now been diagnosed with MS, not something easy to deal with.

I hope you get good treatment, perhaps best to refer you to the old forum for some more info and other members with the same diagnosis see:

pernicious-anaemia-society....

Kind regards,

Marre.

Hi Marre,

Thanks for your concern and kind wishes.

It was partly your good advice that led to this diagnosis and I appreciate that.

Although it is a shock to get the diagnosis it is better to know than to carry on in ignorance.

I have started going through the info on the link you provided and it looks very useful.

Kind regards,

Kontrolla

Thank you for your kind words, just keep up with the B12, and possibly ask the specialist MS department how sure they are your symptoms are MS and how much could still be B12 related/ sub acute degeneration of the spinal cord.

I hope your appointment goes well for you, and read up as much as you can, write any questions you may have on paper now so you do not forget, and write down the answers, not to forget those as well, is what I'd do. I wish you well, Marre.

Ive read a few case studies because have a similar issue, and wonders. the last study I read didn't find a link but theorized that people with ms can use up stores of b12 due to the extra work of repairing methylation damage

"repairing methylation damage" - don't you mean "repairing demyelination damage"?

"methylation" is actually a good thing and it is how the DNA and RNA get activated to make amino acids or proteins.

most of the time b12 damage shown on mri looks different than b12 damage,

Do you have any references for this? I thought I read that it is difficult to tell them apart on MRI scans.

My neurologist seemed to think that the location of some of the lesions on my MRI scans indicated MS rather than B12D.

I'm so sorry to hear of your diagnosis kontrolla.

Just wondering if you've come across these links on Dr Terry Wahls in your research. She used functional medicine and diet to come back from severe MS, confined to a wheelchair, to an active life and recovery.

I'd also recommend 'The Miraculous Results of High Doses of Vitamin D3/K2', by Jeff Bowles.

terrywahls.com/about/about-...

Thanks for the links and recommendation. I was not aware of these and they are fascinating.

I have just downloaded the kindle version of the book.

I am already supplementing with 20000 units of D3 twice a week as prescribed my Doctor. So this is very relevant to me.

Good to know your doctor is up to date on higher doses of vitamin D3 ! I thought you might be interested in this extract from a health magazine:

"When Professor George Ebers, the renowned expert on multiple sclerosis at the Nuffield Dept. of Neurosciences at Oxford University, attended a symposium of top doctors and scientists in Chicago recently, he reported back that ALL the delegates were taking 4,000 IU of Vitamin D per day. Not only that, but so were all the members of their families! "

"By my reckoning, if it's good enough for some of the finest minds in medicine, then it's got to be good enough for the rest of us, right?

Especially since these doctors are the very people who are bang up to date with all the latest cutting-edge research which links vitamin D deficiency to the upsurge of just about every major chronic disease, including cancer, dementia, diabetes and osteoporosis. "

MS links with Thyroid.

Take a look on Thyroid UK website and in search write MS or MS and Thyroid. Have you had a thyroid test done Kontroller ? Google Thyroid and MS together. Also B12 Deficiency mimics Hypothyroidism.

Just had a look on the Thyroid UK website and the link with MS is interesting.

I have not had a thyroid test so I will see about getting this done.

I have a friend with hyperthyroidism and I was recently comparing symptoms with her. Some were similar but some not. But I guess the symptoms can vary with hyperthyroidism as we know they do with B12D.

I have just randomly Googled - (MS and Hypothyroidism,) and there was quite a lot linking the two together, I do know MS/ME/ Cronic Fatigue Syndrome and Fibromyalgia are often later found to be a misdiagnosed under active thyroid (Hypothyroidism.)

Worth asking your Doctor to do a thyroid test to rule Hypothyroidism out.

also B12 deficiency mimics Hypothyroidism.

Thyroid Bloods to ask for are:-

TSH

FT4

FT3

Ferritin

Follate

B12

Vitamin D.

(I believe you have already had the last two bloods done ?)

Myself and other members ask our Doctors each time for a print out of our bloods and their (important,) ranges and post them up on the member's forum on Thyroid Uk (on here, Health Unlocked,) for other members to help you read your bloods.

Remember if your bloods come back 'within range' and your Doctor says you are OK/fine you can still have symptoms and be ill, so don't completely rely on your Doctor for your test results.

Hi Kontrolla,

I'm sorry for the difficulties you're dealing with. MS is a devistating diagnosis. I have/had severe neurological symptoms and an MRI with contrast lead to an MS diagnosis for me as well. Be careful with accepting the diagnosis. I was very lucky, my doctor wanted to rule out every possibility. The damage in my brain and cervical spine looked exactly like MS, but I had lots of other symptoms that weren't concurrent with MS. He ordered a spinal tap to definitely confirm MS. The results confirmed subacute spinal cord degeneration, but ruled out MS. Ironically, my B12 MMA, Homocystine, and IF tests results came back the same day as my tap results. Please ask your specialist to explore all possibilities before you accept MS. Good luck!!

Hi Kontrolla,

I have an MS diagnosis, and can say it is a bit of a shocker, when you are told, and carrying on afterwards. However, MS is a diagnosis of exclusion, Ie. A neuro has to rule out everything else until MS is all that is left. I notice you haven't had a lumbar puncture? My neuro was not 'certain', until I showed oligoclonal bands in my CSF- generally held that this shows immune reaction in your central nervous system, separately from bands that show up in your blood too, and this differentiates between b12/subacute combined degeneration of your spinal cord, and MS.

Recently, having accepted my primary progressive Ms diagnosis, I decided to try out b12 hydroxocobalamine subcutaneous injections, having Been gradually upping my sublingual b12 dose, and my neuro and myself noting I had been 'plateauing', for quite a while, meaning not having any new symptoms, nor getting a gradual decline which you expect, and having recovered my balance and having warm hands, feet etc instead of blocks of ice.

So, nearly three months in, I can as objectively as possible, say I am definitely feeling better generally, have now recovered vibration sense in my soles, even though they are generally still numb. I was reassured by posts here, and wider reading, I am not harming myself with b12, and weekly 1ml injections (goldpharma), diabetic syringe with needle works out about £1.75 each week so it isn't a big investment.

My first symptoms were numb big toes, gradually crept up my legs to my breast bone, with spasticity in legs rising with the numbness, and terrible balance. I didn't realise I had lost vibration sense until a neuro started tapping me with a tuning fork! So, the b12 derived subacute degeneration takes vibration, light touch, but not temperature or pain, starting in legs, then arms, usually with spasticity, which is just a sign of your myelin being damaged. If mine is b12, I guess I have left it far too long to expect full recovery, but the recovery I have had is also inconsistent with MS.

I also have gluten intolerance, so looking to see links, the work of the below neuro, links neurological damage to gluten, you would had to google him, as he has done lots of work, but in some papers he suggests 50% of gluten intolerant people with neuro symptoms have oligoclonal bands in their csf.

Gluten sensitivity as a neurological illness

M Hadjivassiliou, R A Grünewald, G A B Davies-Jones

Always sceptical of my Simply bring in denial, I am reassured Dr Hadjivassiliou is no 'internet quack', but a consultant neuro with uk NHS.

I am not trying in anyway to doubt your diagnosis, but I hoped to give you information that will keep you keeping your neuro on their toes? Mine agrees he can never say with certainty and MS and b12 SACD are mixed up, with Dr hadjivassiliou's research now offering challenge to the csf Nalysis being the deciding factor.

I wish you all the very best in getting your head round it all

Sian