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Multiple Sclerosis Community
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20893019 tn?1578995197

Just checking back in

Well it's been 14 years and So far no new attacks and no new lesions.  I was stuck between ADEM and MS. I haven't seen my neuro in four years who is an MS specialist who said at my last visit that he does not think I have MS.

Still no fefinate DX but at least it hasn't came back.  Two PCP doctors think it could have been B 12 deficiency.
Santana8




2 Responses
987762 tn?1331027953
COMMUNITY LEADER
Hi and thank you for updating the community, though not many are posting they are still checking in from time to time :D

I honestly don't know very much about Vit D 12 deficiencies, nor how they can mimic MS as well as a few other medical conditions but i came across this awareness site awhile back https://b12awareness.org/vitamin-b12-cobalamin-anemia/ and if it's of any benefit to your self or others in similar circumstances it's worth passing on.

Take care......JJ
1 Comments
I came to this forum after being stricken with an acute demyelinating event that resulted in more than 10 white matter lesions distributed bilaterally throughout the white matter of my brain . It also left me with a Homonymous quadrantanopsia which is loss of 1/4 of my field of vision resulting from damage to both sides of the brain. Of course at the time I had no idea what was happening to me.

This forum was my only help as the members guided me to the right doctors and test to get answers and treatment. My story is a 14 year complicated one but I have gained a lot of knowledge about illness like ADEM, MS and all the others that mimic these.

Is Quix still on here?
987762 tn?1331027953
COMMUNITY LEADER
It's amazing that something like a Vitamine B 12 definiciency can cause so much damage, though i don't know if i'd be confident it was the right answer if the MS specialising neuro didn't also mention B12 def as a potential explanation too.  

Quix probably hasn't posted now for about 6 years or more...  

How you doing overall now though?

Take care.......JJ
1 Comments
The MS specialist said that since they didn't do the spinal tap until 8 months after the attack that if anything was in my spinal fluid that could have identified the cause may have been gone after this delay. My spinal tap was negative and showed no O bands.  Also blood work  was normal with the exception of Low B12 and very low vitamin D3.

He said he treats MS patients every day and that I did not fit the picture of MS because nothing new has showed up on scans and no new symptoms or no return of any original symptoms. He says something would have happened in 14 years. He said the only way I would know for sure what caused it now is if it came back and we don't want that.

I haven't discussed what the Primary care doctors told me with him yet but I plan to make another appointment and do that soon.

I am doing well. Although I still have the visual field defect My functioning has rehabilitated ( although not fully) but enough so that I can navigate better through stores and I have retained my ability to read, dress,  navigate the world with my new visual limitations.  Of course I wish I had that quarter of my sight back but have had to accept things as they are and get on with living.  Since I received no therapy at all all of the functioning I regained I did so by actually doing the activity until it became as close to normal as I could get it.
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