Sarcoidosis Support User Group
Neurosarcoid?
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Founded by mygoode on October 4, 2010
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Neurosarcoid?

Hi, I have been diagnosed with probable MS, but have my doubts. I recently was looking up sarcoid for my cousin and was surprised to read that many of the symptoms of neurosarcoid resemble MS.

What is making me wonder now if I have sarcoid rather than MS is that I get small sores on the edge of my nose, and sometimes just inside my nose, nearly every time I ahve a bad "attack".  I've never mentioned that to my neurologist as I thought they were just small infections like pimples> though they can last for about 6 weeks!

So my question is, do sarcoid lesions on brain MRIs disappear after an attack? If they DO, I can rule that out as I have had the same lesions sitting there for 3+ years.

One other thing: my last MRI showed "bilateral subependymal nodularity". My neuro said "that's part of MS", but my MS Nurse and the MS community here and Google have ZERO reference to that being part of MS. I am wondering if 'nodules' can be sarcoid? All google refs seem to tie it in with seizures, epilepsy and brain damage ffrom birth,w hich i don't have. (Though i have had one seizure, I think as an adverse reaction to codeine though)

All and any opinions would be greatly appreciated.

You can see some of my brain MRO scans in my pics on my profile.

Cheers
1 Comment
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570898_tn?1286205761
I'm very sorry you did not receive an answer for this when asked but what you mention does sound like sarc.  Skin lesions are a symptom and the "nodules" you mention could be granulomas.  Of course, I'm hoping you received a Dx a year ago so all this would be moot.  I'd love an update if you have one.
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