Re: Nerve Biopsy-my personal experience

March 8, 2009

I had a sural nerve and muscle biopsy in June of 2003, only as a last resort for

diagnosis. I learned on day one of my visit to Mayo Clinic in Rochester that I

did NOT have CMT. I was there for a total of 6 days undergoing every blood test

and diagnostic test you could think of to determine what I DID have.

I had a spinal tap, MRI, EMG, sweat test, opthamolic exam to name a few, just to

get to the bottom of my illness. It wasn't until all of these tests/exams were

inconclusive that I elected to have the biopsies, which revealed a Motor Neuron

Disease. The doctors could not have made the diagnosis without them.

The muscle biopsy which was taken from my left bicep was done without

anesthesia. It was excruciating. The healing of the nerve biopsy, caused me a

lot of discomfort for many months. The firing and sparks up my leg were very

uncomfortable. Those eventually went away, but the complete feeling in my ankle

has never fully returned.

My advice to you is that if you already know that you have CMT, don't put

yourself through the biopsies. On the other hand, if you're searching for a

diagnosis, the biopsies may be your only hope for answers. I don't regret the

decisions I made, but for me they were totally necessary. Good luck on your

decision.

K.

March 9, 2009

I agree about how excruciating a muscle biopsy is. I,too, did not have

anaesthesia and boy, I would sure hate to go through that again! Pain was never

discussed with me until the night before and the nurse that called said she had

seen grown men cry during the procedure! You can imagine how I felt upon

hearing that. The good news is that once it is over, it is over. No after pain

like I hear you can have from a nerve biopsy. In fact, the doctors told me to

NOT have a nerve biopsy because of the pain involved.

Unfortunately, they couldn't tell anything from the muscle biopsy and eventually

gave me a wrong diagnosis of MS before I finally was told I had CMT. Also,

insurance companies really screw you over when they know you have had certain

tests AND take prescription pain medications. Be careful and don't have

anything done that could be unnecessary.

Karon:)

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