Re: brain atrophy

[Guest guest]

i just got my mri report back and they found brain atrophy, is part of the saarcoid or has this been a part of someone elses sarcoid???? please let me know any info you have on this. thanks ken

Ken, this is a fantastic site!!!!!!!!!!!!! Yes, this is part of sarcoidosis and is a sign of cerebral vasculitis.

http://radiology.rsnajnls.org/cgi/content/full/213/3/794

I highly suggest you print this out and take it to the neurologist. I did a search with "brain atrophy and sarcoidosis". Got a lot of hits-- so plenty to read!

You need some serious immunosupressant meds, Cytoxan, Remicade, Enbrel, Humira are all choices. What Remicade and Cellcept have going for them is that they specifically target the TNF-b cell protein and don't wipe out your entire immune system.

This was actually an article on Wegeners Granulomatous, which is a close cousin to sarcoidosis, and some think that these are one and the same. Interesting to me is that it is significant in those of us that have sinus involvement. A full body scan might show that you have dura thickening along your spinal cord also.

I know this is scary- and that you can get your life back. At least a good portion of it. It's going to take a combination of drugs, and I hope they start introducing something other than the steroids. Your "cocktail" will be for life-- that is you will not be able to discontinue them. If you did stop taking them, then the sarc bugger would come back, and so by staying on a regime, you keep it at bay.

I will tell you from personal experience, that once I got the right combo, I've regained some of my mental function-- and my body and bone pain is much better. I still see some muscle wasting in my legs, but my mind is clearer. Much clearer. The exhaustion and fatigue are issues I deal with-- by pacing myself. It's all I can do-- and we have to learn to listen to our bodies.

With compassion,

Tracie

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