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Living with Polyneuropathy CIDP, GBS, & CMT

Pain in wrists CIDP or carpal tunnel


#1

I am a drummer. I was diagnosed with CIDP in March 2016. I’ve had three IVIG treatments and not sure it’s working . . . as I still have fatigue, calf pain, and worse for me now is the wrist pain that is making it difficult to hold up sticks. I’m a performing drummer so this is very worrisome. Anyone else experienced this. I’m considering carpal tunnel surgery but what if that is not what I have but it’s demyelination. How do you know?


#2

I can only share my experience and I’m not certain it will be helpful. It took a long time for me to get my diagnosis and I saw several neuro’s over a period of years.
As my symptoms worsened I was told I had very severe carpal tunnel and he wanted to do surgery ASAP. I wasn’t buying it. I asked why if I had carpal tunnel was I losing my balance, falling, having horrible fatigue and weakness and serious pain in my feet and legs as well as numbness? He just looked at me and said “I’m not sure”.
About a year later I was much worse and went on to several more neuro’s but this time at a University hospital where I was finally diagnosed. The doctor who made the final diagnosis told me that having carpal tunnel surgery would have been "a serious mistake, you could have lost the use of your hands!"
That said, if I were you I’d get a second opinion, possibly a third. Good luck!


#3

Thank you, Maggie for your informative response. Just what I needed to hear. I will certainly get other opinions. Drumming is my livelihood so I’m concerned that I might have to stop playing. Carpal tunnel surgery seemed like an easy way out! but obviously not.
Are you on treatment? Is it helping? I’ve had peripheral neuropathy for 12 years after lots of chemo (multiple myeloma and lymphoma plus two stem cell transplants) so my symptoms are difficult to diagnose as to the source. Fortunately I was diagnosed with CIDP at the beginning of my more severe symptoms by a very savvy doctor at Stanford.
You seem to be carrying a painful load. Take care.
Jim