RE: Looking for information; does this sound like neuro sarc to you?

[Guest guest]

Hi! Welcome to the group, although I wish it weren't necessary.

The skin sensations you are describing sound like small nerve fiber neuropathy. This doesn't show up on an EMG, but requires a nerve biopsy to confirm. If you are already on treatment for sarc, there isn't really a reason to do the biopsy. I have a friend who describes it as the "heebie jeebies." I've had the squeezing sensation you describe, but in my thighs. It feels like a blood pressure cuff tightening up; uncomfortable, but not really painful. I haven't had that feeling for a couple of years, maybe because I'm allegedly in remission.

These symptoms could be signs of peripheral nerve involvement, but could also have other causes. Are you comfortable with your medical team, that your docs are uptodate on sarc, latest research, treatment options, etc? Do you mind telling us where you live & where you are receiving treatment?

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Looking for information; does this sound like neuro sarc to you?Date: Tue, 03 Jul 2007 00:54:57 -0000

Hi all:This is my first time here; I found this group when searching forneurosarc information.I have a definite diagnosis of sarcoidosis secondary to a bronchoscopyand multiple biopsies in April. I have multiple granulomas in mylungs; extensive lymph involvement in my chest and abdomen; erythemanodosum. My doctors also believe I have liver involvement, but a liverbiopsy last year (prior to any suspicion of sarcoid) didn't showgranulomas. I'm currently on 40mg prednisone a day (times about 3weeks). My lungs feel a lot better (though far from perfect). My e.n.have cleared up wonderfully.But I'm having these new symptoms, and I'm not sure if it's morelikely from the prednisone or the sarc. Last week I had an endoscopyand colonoscopy, and at first I thought it was a post sedative thing,but it's not going away. My hands and feet feel weird, something closeto itchy but not quite, and the sensation creeps up my arms and legs.Both arms and legs feel heavy. There's some tingling, no numbness buta decrease in sensation, and sort of a cold feeling. Like there's acold draft hitting me. Or like I'm about to get goose bumps. And mylegs feel like they're being squeezed. It's not painful, but notpleasant, either.Emotionally I've gone from doing quite well to feeling very fragile,crying frequently, and being really irritable. Within the same timeframe. I haven't noticed any changes in vision, hearing, taste, smell.No Bell's Palsy or similar symptoms.Any thoughts or advice would be much, much appreciated.

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