How many of you needed a nerve biopsy?
AnonymousJuly 7, 2009 at 10:57 pm
I am darn sure that I don’t have CMT because of the conduction blocks that I have.. (I now have more than I had last year).
We already know I have demyelination, but my spinal tap came back normal.
So they are requesting a nerve biopsy.
My question for you all, is how many of you needed a nerve biopsy?
I know that there are CIDP persons that do have normal spinal taps, and that I am not far from the norm as far as that goes.
I’m just irritated that I have to go through yet more testing.
Thanks in advance.
July 8, 2009 at 12:24 am
We have not had one, but another girl Kevies age (12) did. She did fine. However, there are others that wish they never did it. Just my opinion, not worth much, but I agree with you, it does not sound like CMT because steroids have helped you in the past. Especially since they gave you a bad reaction, I also agree with you that they probably would not be a drug of choice for you in dealing w/ cidp. Is your doc receptive to suggestions from you? If he is, perhaps you can ask him to do a couple of loading doses to see if they help, that would kind of be a diagnostic tool if you see a difference. Since your l/p was ok, he might be feeling the biopsy is needed to get insurance agree to ivig since it is so………..expensive. On another note, there was another member on the sight that was given cidp as a dx and ivig, imuron and steroids did not help. they finally did a biopsy and in fact it was NOT cidp. Well, good luck!!!
Dawn Kevies mom
AnonymousJuly 8, 2009 at 7:57 am
I guess I was lucky…..they did both a sural nerve biopsy and a calf muscle biopsy…….after doing both spinal taps and 2 nerve conduction study’s. No problems to report from the nerve biopsy except that it’s very very wierd to have an itch where they took the nerve out…….
AnonymousJuly 8, 2009 at 8:09 am
I had a nerve biopsy, and will also be having a muscle biopsy. The reason for them in my case is that my symptoms aren’t completely consistent with CIDP (but then, are there any really consistent cases of CIDP?) For me the biopsy was no problem because I’m already numb from the knees down (and as my husband says, from the neck up). A few people have problems with residual pain where the nerve was removed.
CMT was suspected early on in my case because I have very high arches, but was essentially ruled out through genetics testing (genetics testing for CMT is more common here in the UK than in the USA). It was completely ruled out when I responded to IVIg. There’s some good information on CMT testing at
AnonymousJuly 11, 2009 at 12:17 am
I tend to be wary of nerve biopsies. Just because a nerve is healthy in your ankle does not mean the nerves in your shoulder etc. are healthy. And I’ve heard to many people talk of pain that doesn’t go away after the procedure. I asked a doctor about this and he said that there is no way to “know for sure” until an [I]autopsy [/I]how much of the nervous system was damaged 😮 Each of us has to make our own choice for our own situation. Good luck.
AnonymousJuly 11, 2009 at 12:49 am
I had a nerve biopsy and it was the final diagnostic tool in my case. The spinal fluid test was just barely out of normal range (+10%), the EMG showed problems, but was not overly clear. Genetic testing was negative, everything else was negative, or barely abnormal.
The nerve biopsy showed demyelination and remyelination in both muscle and sensory nerve pathways. As a result, the diagnosis was firmed up and treatment began.
Diagnosis is tough in these cases. Hang in there, but be persistent.
AnonymousJuly 17, 2009 at 1:28 pm
Like DickS, all my testing came in at “almost normal” and the biopsy was the only definitive indication of CIDP. Until they did that, I was certain I was just a mental case… numbness at that time was from just above the ankles and down, and I was just starting to “tingle and burn” in my hands. (many years ago.) I never have noticed a difference before or after the biopsy (was already numb). Maggie
July 20, 2009 at 8:11 pm
When you say you found nothing out. does that mean there was no onion bulbing? If there was not, then there were no continual demylienation processes going on. Whithout the onion bulbing, it would mean you have something else. if there was onion bulbing, then cidp would be the likely dx.
What did the doc say about the results?
Dawn Kevies mom
AnonymousJuly 20, 2009 at 9:18 pm
I didn’t have a nerve biopsy. I have read on this site that they can leave you with permanant pain, others say not.
Another thing I have picked up is that not all biopsy’s are created and performed equally. Some only trust Mayo or certain centers of excellence to do it to ensure an accurate reading. I have read of varied results from contributers on this site.
In the end if you need the diagnostic criteria to get treatment, I would do it but recommend that you make sure you are having it done at the right place and examined by the right place.–tim–
AnonymousAugust 2, 2009 at 5:45 pm
I had a nerve and muscle biopsy, and if the doctor hadn’t sewn me up with dissolvable stitches it would have been fine. as it was I ended up getting flesh eating bacteria on the subway. it’s all OK now. And there was no permanent damage other than scarring from the FEB.
Also, it showed them what they needed. Onion bulb.
AnonymousAugust 5, 2009 at 10:30 pm
I was worried about getting a nerve biopsy after reading several negative reports on this forum. At the time, my condition was worsening, my NCV/EMG results were not typical of cidp, and I had zero response to a trial round of IVIG, which led to uncertainty about my diagnosis. The biopsy went fine, healed well, and helped confirm the cidp diagnosis and the decision to continue treatment. After three more months of IVIG at 2g/kg, my condition finally stabilized. So it was good that I had it done. By the way, I agree with the comment above that it is probably important to have the procedure performed by a doctor with acknowledged expertise in this area. I have been fortunate to have had very good medical care through the course of my illness.
AnonymousAugust 19, 2009 at 12:07 am
I had a sural nerve & muscle biopsy 4 weeks ago. Helped with diagnosis but 8 days after the biopsy I began having severe pain below the site of the nerve biopsy on the side to top of my foot surging into my 3 outer toes. This was unbearable, became some better after about 10 days but still have tingling & electric sensations on the side of my foot (outside middle) this has been tormenting. I wish I never had the nerve biopsy. No problems at all from the muscle biopsy in my thigh. I would never want anyone to suffer from this it is not worth it. I have CIDP and that is bad enough without this added torment.
August 19, 2009 at 11:43 am
My spinal taps were normal and EMG’s while off, were not conclusive, so I had the sural nerve and thight muscle biopsies. Had an excellent neuro surgeon and had no problems with either site. Got positive confirmation on the CIDP dx. Only residual is a numb spot on the side of my foot where the sural nerve was removed. Never experienced any pain at either site. It has been 13 years now.
AnonymousAugust 20, 2009 at 6:15 am
I had a normal spinal tap, assymetrical weakness with focal blockages.
they did HNPP(Hereditary Neuropathy with tendancy for pressure palsey)
basically the genetic test for compression damage. Before trying anything.
Steroids accelerated my decline, so we immediately went to IVIG and it made a huge difference. So that solidifies my diagnosis.–tim–
Glad I didn’t have to have any biopsy done.
You must be logged in to reply to this topic.