Diagnosed with CIDP about a year ago and have tried steroids, IVIG, six months of chemo, and five days of plasma exchange…nothing has helped. Visited to doctor three weeks after plasma exchange, did the electro nerve conductivity tests and determined that I was not getting better but getting worse.During visit the doctor noticed that the nerve on the inside of my right arm was considerably enlarged…and he said I could possibly have leprosy, What! He asked wheure I had travelled outside of the U.S. (No), Lousiana…yes, but 9 months after all this started… He indicated that armadillos are carriers of leprosy. This all happened on April Fools Day, so I am almost laughing at him, but he was serious.
Since I had not responded to the “normal” treatments, he scheduled me for a nerve biopsy which I had on April 30th. He indicated that he wanted to test for leprosy and CIDP.
They did the nerve biopsy in my right hand between the base of my thumb and the wrist. I had no issues with the biopsy until the last several days…the nerves on the inside side of my thumb, down to the meat part of my hand and up th side of my index finger has become very sensitive to touch. My ability to grasp any anything in my right hand has gone fromdifficult , to painfully difficult? It feels as if the nerve is inflamed and trying to bust out of my skin
Has anyone else had a nerve biopsy? Will the pain in this nerve go away overtime? The doctor indicated before the surgery that the thumb, and index finger will now be permanently numb…not good for my photography hobby
So has anyone had lerosy?
That sounds terrible! I think I would be looking for a second Opinion......I'm from LA too, I have what I think is a good Neurologist in the Hammond area. Leprosy??? There are many people on this site with greater knowledge than I, I'm sure will be able to give you some sound Ideas.
I've got nerve biopsy on my list of things that may be done. I was DX with CIDP a year ago based on a physical exam, history and EMG. I was sent to a Dr. that is supposed to be the top guy in the country for ALS and "excotic" neurological distoders. He took one look at the EMG and said if it was accurate that it was impossible that I could walk even with the cane I was using. He's put me through dozens of blood tests, and a second EMG by his favored Dr. for EMG and got the same result as the first. He shook his head and said it must be a technical issue, however his expert actually changed his equipment and repeated the entire test with over a dozen needle tests as well and got the same results. No responses in the legs, axonal damage, and muscle wasting in the feet and delayed responses with one no response in the arms. My ability to balance is not great, my legs are not as strong, but I can still get around pretty good on a cane or two. Lyrica has pretty much controlled most of the pain and shocks. I've not been treated for the actual CIDP in any way.
Now I'm being set up for a lumbar puncture, which I really dread, and an MRI of the lower spine to look for inflammation of the nerve roots. If that does not satisfy him he's going for the nerve biopsy next. I'm getting tired of the whole testing thing. I've had this 30 years, it's progressed a bit more quickly the last 1 - 3 years. The disease bothers me less than the endless paperwork, lab tests. doctor visits etc. I was almost never in the doctors office all my life unless pneumonia or a broken bone brought me in. I'm about ready to just pack it in and stay home. The disease seems less of a hassle than the doctor visits and tests.
I’ve heard of taking a biopsy at the ankle but not usually in hand for CIDP. That seems unusual to me. Also, I was worried about having a lumbar puncture but done correctly is was not uncomfortable. Just make sure you follow the instructions of staying horizontal afterward or can suffer a headache.
Wow Blake, I'm so sorry to hear that you are going through all this. I've had CIDP for many years but never heard of any relationship linking CIDP and leprosy. I agree that getting a second opinion is a good idea. The nerve pain in your hand/wrist could be a good thing. Maybe your nerves are healing and sensation is returning. It sounds like there could be some inflammation there too. I have not had a nerve biopsy so I don't have any personal experience to share with you.
My prayers are with you.
Blessings and stay strong!
I had a sural nerve biopsy in my ankle which definitely proved I have CIDP. They need to biopsy a nerve from the central nervous system, but I have never heard of it being done in the hand. Before this, I also had the spinal tap which should have shown protein levels were accelerated, but it didn't, therefore moved on to the sural nerve biopsy. I've seen where others had no problems after the nerve biopsy, but mine has given me quite a bit of problems. I was told they would cut out 3 inches of the nerve, but they cut out 6 inches instead. It has been almost 3 yrs. now and I have major electricity in my left heel where the nerve biopsy was done. I've seen a pain management specialist about this but they give you drugs and I can't deal with that. They also wanted to implant a device to block the electricity, but I made the choice not to have the surgery. The more band-aids they put on, the more problems I have. I decided to just deal with the electricity. I hope you find a way to deal with what you have been left with in your nerve biopsy.
Are you anywhere near Cedars-Sinai Hospital, in LA? They have a CIDP center of Excellence there. The Doctor is Richard A. Lewis. He is an excellent doctor I have been in remission for nearly three years because of his care.
His contact info is:
127 S San Vicente Blvd
Los Angeles, CA 90048
United States of America
Main Office - 310-■■■■■■■■
I am in Baton Rouge and have been diagnosed in December. Had Lymphoma and chemo last summer (in remission). Now have right foot drop, right leg peach and aching and now some dumbness in leg foot. Please respond as would like to maybe trade info on our experiences. I have a pretty aggressive neurologist and he seems to be trying everything.
I have backache spots and on both hand arms . My cidp turned to axonal . would i have to test for leprosy
Went to a ew neurologist today…he had my nerve biopsy results, which were rather surprising. Results came back NORMAL…no leprosy, no CIDP. I think this is great news…just need to find out what is causing the neuropathy now…so we start again.
Really happy to hear this, BlueHose. Lots of causes of neuropathy -- I hope yours is identified soon. All the best to you!