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Old 02-22-2015, 12:55 PM #1 (permalink)
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Default Anxiety over the Unknown

Hello again.

I received my brain MRI results. No change in 6 months. Still some white matter lesions that could be attributed to migraines (I've only had 2 in my lifetime -- last one was 20 yrs ago), demyelination (maybe MS), or a past infection. From what I know now, many folks have white matter plaques. The only unique aspect is that mine are more prominent and atypical for my age and history.

I've gone in a big circle. I have an appt with the new neuro this Tues.

I have no idea what next steps to take. The atrophy scares me.

More EMGs in different locations?
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Old 02-22-2015, 07:19 PM #2 (permalink)
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Default Re: Unsure and confused

Dave,
I'd see a [traditional, not a Lyme profiteer] ID and rheum to make sure their respective bloods are done and if they have any thoughts.

Given the timeline, unless you've never been out of the inner boroughs, I'd ask the ID about empirical tx (doxycycline, absent contraindications) for Lyme.
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Old 02-22-2015, 08:03 PM #3 (permalink)
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Default Re: Unsure and confused

Thanks so much for the reply.

I did see a rheum but forgot to mention it (another symptom or just the Tegretol and Lyrica, Idk). He strongly suspected a parvo virus but his blood work ruled that out. I was tested for Lyme as well. And besides a borderline-positive ANA (I've been tested 3x -- always 1:80 homogeneous), everything else was normal.

As I mentioned, I am active (or used to be) and walk a lot but it's mostly pavement. I rarely trudge around in the woods -- but who knows what might be lurking here and there.

My new neuro and the rheum both said "Sounds like a virus" when I first spoke of the onset but they didn't find anything in the blood. The rheum thought it would burn out but it hasn't. There has been an evolution though. Some symptoms have remained constant or worsened but others came and went. I'll bring up the ID angle as well as CIDP to my new neuro.

Also, I forgot to mention constant, low-level hissing as well as intermittent ringing in my ears.
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Old 02-26-2015, 02:32 PM #4 (permalink)
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Default Re: Unsure and confused

Had my Neuro appt earlier today.

He doesn't think it's CIPD, Lyme or CMT.

He referred me to another neuro who does mostly EMG/EEG for a more comprehensive EMG. My first was only from the knees down; I'm still not sure how that works -- meaning if you can extrapolate system wide from just the lower legs or if you need more areas tested? But he suggested it considering the atrophy in my left shoulder/arm.

Symptoms haven't changed except I had another night sweat (but just the head) -- which I had not experienced for a while. And we had snow storm by me, so I tried to do some shoveling but got exhausted and dizzy so quickly that I stopped.
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