A sural nerve biopsy, if it is carried out properly.
To make this not too long, I am in the same boat as Dick…slow progressing.
Read my post under, “To Rhonda and Ryan, and others interested in how bad CIDP can get”.
I remember back in the beginning, when they, (the neuros), were going through the months of coming to a final diagnosis, telling me they had to see what I DIDN’T have compared to what I did, at first. They told me that the list of Neurological Diseases/Syndromes/Problems was VERY long, and many having similar symptoms, that they had to keep crossing off what I DIDN’T have, as MS was what they first thought I had, but just didn’t EXACTLY fit.
So, they wanted to do the nerve biopsy, (Sural nerve). I had no problem with that. They had a neurosurgeon do–had no problems with that, as I couldn’t feel in that area anyways, (behind the ankle).
But the problem came down to the LAB that did the biopsy. The lab technician messed up on it, and couldn’t be sure what that person was seeing. My neuro got very angry, and wanted to come to the lab and see it for himself. “Oops-I already threw it away”, was the response, only to make my neuro further angry. Turning the procedure done, useless.
My neuro explained what had happened to me, so I offered to him to go ahead and do another one. He told me he would just continue with the other diagnostical tools, (yikes-the pills I’m on now, make my memory bad, so I can’t remember all those test’s names with just letters, but it was where they put the electrodes around your body and check nerve responses, and the one where they put needles into the muscles, etc.). They finally did come to the end diagnosis, with the help of my neuro.’s teacher in Med. School, who is a top neuro of San Diego County, and one who deals with rare diseases. He was the kind of specialty-neuro, where he would decide if or if not he would see you, (he did chose to see me, and did more testing).
So, if you do have the Sural Nerve Biopsy, know ahead of time that first you have a good neurosurgeon to do it. AND EVEN MORE IMPORTANT, that the send it to a lab who knows what they are doing–as my lab flubbed it. I see in posts back to you, that many had suggested that the lab used, be the Mayo, as they are more used to Neurological problems, and what the results should look like.
Keep us up on your final results. Good luck.