Hello, I'm new.
I was just recently diagnosed with extensive Leukoencephalopathy, non-specific Demyelination, & Swollen Lymph Nodes (both sides of neck, of much concern; found by chance while viewing MRI's of brain and spine).
My problems began in 1996, the first symptoms. With progression, I was eventually diagnosed with Multiple Sclerosis (and the million-and-one other possibilities were ruled out along the way); now, with further progression and new developments, it has been confirmed that I do not have Multiple Sclerosis. The diagnosis of Multiple Sclerosis was always labeled "atypical" (it was a very mysterious manifestation, very uncommon for MS, but everything else had been ruled out) so it remained in question until most recently, pending the new developments that came to pass.
In 2001, I had to leave the workforce (but dedicated myself to finding the problem, recovering and returning to work); however, my condition progressed and in 2003, I was declared disabled and have since received my disability income to cover my living expenses.
Being uncertain about where to post, I thought I would post here ... since my situation was purely limited to the central nervous system and neurological disorders until most recently, we now add the swollen lymph nodes ... things are getting spooky.
If anyone has the time, it would be truly appreciated if you would, please, reference my link, in which I placed two posts within that one link I started ...
... in the forum titled:
'I cannot get a diagnosis. Please help.'
Relentless tests and so forth began in 1996, I received my diagnosis of Multiple Sclerosis in 2003, it is now definitively confirmed that I do not have Multiple Sclerosis and it is now completely ruled out. But now we have these new findings that I am diagnosed with. My lumbar punctures remain normal, as well as the MRI of the spine. What I have is limited to my brain and my lymph nodes at this time. I have three upcoming appointments (my internal medicine specialist, about the lymph glands, and two appointments with two separate neurologists ... the three of them, to review and discuss these findings; biopsies have been mentioned, but they don't sound like they believe biopsy would be a very feasible/safe option and should be avoided if at all possible).
Thanks so much!
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