I have tingling and numbness from my fingers on up to my elbow and from my toes to almost my kneecaps. Today it got brought up that I might have to have a nerve biopsy done in the future to determine if I have sarcoidosis of the nerves. From what the internet says, they make an incision by my ankle and cut out a sample of my nerves. That sounds painful to me. Has anybody gone throught this to see if they have sarcoidosis of the nerves???
I was having severe pain in my hand along with my hips I fell broke my hand,elbowand forearm and then the ortho doctor said my hand pain is Sarcoid so he did a modified carpal tunnel after the fratures healed and said it was a mess but my hand pain is better I have some strength loss in my hand and other issues but the nerve test was normal so I wish I could tell you which way to jump
A few years ago They wanted me to have one due to some problems I have with peripheral neuropathy. I decided not to do it at the time due to the risk of nerve damage in the area of the biopsy. They told me it was possible the area they biopsied would get numb or painful and remain that way, so I declined the procedure.
Plus, there is always the problem that they biopsy the wrong area and the test comes back negative.
I would ask the doctors the following; first, what conditions would this test rule in/out; and second, assuming I have condition X, what would the treatment be? Then see if the treatments could be given without doing the biopsy. If they can, then you may just want to go ahead and treat without the benefit of the confirmation of the condition and see if the numbness gets better, assuming the treatments have few risks.
Hi. I had a sural nerve biopsy last year. In this they make an inch-long incision around the bottom and side of the ankle bone and remove an inch-long piece of nerve. (In some instances they may take a piece of nerve further up the ankle.) I had it done because I have CIDP, a peripheral neuropathy caused by the immune system attacking the nerves, and I had stopped responding to treatment. (My sarc is thought to be dormant.) It found that I also have vasculitis -- joy of having three autoimmune disorders!
I've had no problem with the biopsy, but then I'm numb from the knees down anyway. Others who have had it say that they now have a numb area where the biopsy was done (which makes sense, since they take part of the nerve), and some are left with pain in the area and tightness of the skin.
I wouldn't recommend the biopsy (or any invasive medical procedure) unless the doctor believes it's necessary, but it can be useful in sorting out the cause of peripheral nerve damage and may enable you to get treatment that will help.
Best wishes in the battle,
Deb
Hi Deb,
Thanks for posting your story. I was wondering what treatment you got (if any) for the CIDP and did it help?
Regards,
Violet
Hi, Violet.
I've had CIDP for nine years. For the first few years I had intravenous immunoglobulin, which worked a treat. The problem is that the past two years the CIDP has become more progressive and is now combined with vasculitis, and IVIg doesn't work any longer. I've tried corticosteroids twice, and both times they've done nothing but make me sick (I'm still dealing with the ulcer from the last time -- an ulcer I got despite taking three other drugs to stop it). So we're going to be trying some of the more potent drugs.
The irony is that I've apparently had sarc for some fourteen years, which went undiagnosed but left me with breathing problems (when the doctors said they couldn't find a cause [i.e., it's all in your head], I just learned to live with it). It was discovered eighteen months ago on a CT I was given because of a family history of heart problems. Happily, my heart is in excellent shape!
Keep fighting,
Deb
London
Hi Deb,
Thanks so much for your reply. Sorry to hear that the immunoglobulins stopped working-have they tried the Plasmapheresis on you? I read somewhere that it sometimes helps, and it is not as bad as having to take the steroids. Hope the next round of drugs they give you does the trick. You keep fighting too!
Best,
Violet
Hi. I have had sarc in the luings, and simultaneously with that I started developed numbness and tingling in the upper thighs along with weaknees (climbing stairs, and walking more than 3 city blocks is tiring). I have just gone through MRI, EMG which showed nothing. Last week I had a muscle biopsy to see if that would show anything (and that was easy - no pain). The neuro and my PCP say its prednisone (which I am being weaned off of - down from 60 to 10 mgs) but my rheumy and I don't think its that as the weakness started either befire or simultaneously with the pred. The surgeaon who did the biopsy is also testing for myasthenia gravis. I personally think that it will end up being "neuropathy of unknown origin". Oh well, could be worse.
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