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.

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.

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

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

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-...

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.

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