B12 deficiency
I was initially told I had a b12 deficiency and treated for that, no improvement of symptoms but I’m in a b12 deficiency group on Facebook and people in the group say I was never efficiently treated (every other day for two weeks and then moved to every 3 months, apparently injections should be every other day until no further improvement).
Then after an MRI showed lesions to brain stem, cerebellum, spinal cord, and periventricular areas, neuro have changed directions and are saying MS. People in this group feel very strongly that it is likely still b12, and the overwhelming consensus in there is that b12 deficiency is often misdiagnosed as MS and that I should be treated for b12 deficiency. It’s really opinionated in there, my doctors want me to continue b12 injections every 3 months, people are saying it’s excreted after 48 hours so that would be severely under treating. Also being told that they present so similarly that the MRI findings could still point to b12. Feeling less clear than ever, and I have no really line of contact with my healthcare team to discuss it other than email which is answered very infrequently
"People in this group feel very strongly that it is likely still b12, and the overwhelming consensus in there is that b12 deficiency is often misdiagnosed as MS " ........And they are consultant neurologists and radiologists with access to your MRI files are they?? I would trust your doctor!
This is really interesting for me. I had some weird tingling had blood tests, b12 was low so I had the injections 1 every 2 days for 3 weeks. After that I continued to take a daily oral spray & supplement. I also had an mri which showed lesions not many ( 7) I then had a lumber which showed only 1 band but I did get a diagnosis of MS. I got my vit d & b12 checked every 5 months and my levels are in the normal range now. My MS is also stable. I would like to be able to follow your story as this is similar to mine.