Thanks firstly for this forum being very helpful over the last few weeks.
Just give a little background , since March 2014 I have had an on-off burning / tingling / electric sensation in my left food , seems to last for a month or two and then I don’t notice it and it has happened many times since the onset. At first I thought just a trapped nerve or something wrong with my foot, anyway fast forward to September 2021 I get a new symptom , which I now know is called Lhermitte’s sign - I still get this now but it’s not painful , just annoying.
Anyway , I’ve seen a neurologist and had an MRI on my brain and spine and there are small lesions on my brain and some on my spine. The neurologist is awaiting blood test results before we go further but has already diagnosed me with a B12 deficiency, but I think he leans towards me having MS due to there being lesions in my brain and spine. He seems to be optimistic about my prognosis however, hopefully he’s right!
Not really sure what the reason for my post is , I guess at present I hope it’s a b12 deficiency on its own - is this still possible ? & if it is MS I hope my prognosis is good , hoping the fact I’ve had it since 2014 and haven’t yet got any disability means my prognosis is good.
Like I say , unsure what I am posting for , I guess just a word of encouragement if anyone has any ?
B12 deficiency can certainly cause lesions in the spinal cord and on the brain, and cause L’Hermittes’ sign and tingling. Your neurologist appears to be proceeding with appropriate tests - sounds as if you are in good hands, which is the important thing. Hopefully it will all just be due B12 deficiency and not MS.
Yes, slow progression in the early years is a generally a good indicator of less aggressive MS and slower long-term progression. Some people may only have a small number of relapses and then the MS seems to go dormant. I have two friends where this is the case - 25 years on from diagnosis, no worsening of symptoms, and symptoms are very minor.
I’m still awaiting my blood test results for Aquaporin 4 and MOG anti bodies.
On the letter to my GP the neurologist writes that I have “non-acute lesions” on my spine & brain , I’m not sure what this means in terms of prognosis as it doesn’t seem to be a widely used terminology (on google at least) , any ideas?
It’s a very surreal thing at the moment as like I say I’ve had the symptoms since 2014 but they have been annoying more than painful or disrupting , hoping it continues to be annoying or it’s just a b12 deficiency , I have my first b12 injection next week - hoping it gives me a boost. I’m wondering if even if I have MS, it may be the b12 deficiency causing my symptoms , it is an enigma indeed.
Anyway , thanks again , it is great to have somewhere to write this and even better to get a reply
