Complications with Peripheral Neuropathy

I have the idiopathic form of PN that has advanced to the central nervous system. It started after acdf c3-c6 surgery(which was successful in correcting most of my severe spinal symptoms). Started with a hypersensitivity to touching any metal and soon advanced to fabric, both clothing and fabric/leather furniture. I started with the metal-LTT analysis blood tests(Orthopedic Analysis) and a patch test by a dermatologist. When both were negative for all metals I was referred to a rheumatologist and a neurologist. After many kinds of blood tests and neurology tests the rheumatologist found nothing that applied but I’m continuing with the neurologist. Tomorrow is my third. Other than prescribing baclofen for muscle spasms(my pcp put me on Gabapentin) he has not come up with a diagnosis but more importantly no kind of treatment. At the second appointment he said no to PT, myofacial release massage, pain management, even water aerobics, as they could increase the damage. At tomorrow’s appointment my husband and I have decided he needs to come up with a treatment plan or refer me to another neurologist. Very frustrating and scary as my nervous system increases its hyperactivity to perceived threats.

I can relate. I can't find a neurologist that can tell me what is going on, but sometimes my whole body starts spasming, jerking. I'm wondering if that means mine has also advanced to the central nervous system. If so, like you said, they can't seem to find any treatment plan. The surgeon keeps saying if will get less and less, it's the nerves reenervating or something like that. In the meantime they just give me muscle relaxers like you said that do nothing.

I saw my neurologist this week and he is saying that mine has advanced to the central nervous system which is interpreting more and more normally benign contact with threats(paresthesia of skin, heperesthesia and other chronic pain). And yep, he doubled my baclofen again. He stressed mild exercise such as walking and water aerobics as important to maintain muscle strength but again no other treatment plan. I’ve stopped seeing my neurosurgeon. He was leaving it up to me but wanted to put two posterior rods in my neck to stabilize it. C5-C6 haven’t fused and kyphosis has started again. He said it was a 50/50 chance that the surgery would stop the nerve hypersensitivity but considering this started after the original acdf as hypersensitivity to metals there’s no way that I’m willing to have more metal put in my neck. I think we’re in the same situation where our symptoms are falling in a grey area where no effective treatment is known and meds to lessen the symptoms temporarily are all they have in their bag for us.

If you don't mind me asking, where are you located? You can send me a private message I think. I am single, live alone, older and feeling very overwhelmed.

@annie1 - We removed your email address to protect your privacy since Connect is a public forum. Like you mentioned, members can share personal contact information and protect their privacy by using the private message feature of Connect. See the Help Center for information on how to send a private message - https://connect.mayoclinic.org/help-center/.

I saw my neurologist this week and he is saying that mine has advanced to the central nervous system which is interpreting more and more normally benign contact with threats(paresthesia of skin, heperesthesia and other chronic pain). And yep, he doubled my baclofen again. He stressed mild exercise such as walking and water aerobics as important to maintain muscle strength but again no other treatment plan. I’ve stopped seeing my neurosurgeon. He was leaving it up to me but wanted to put two posterior rods in my neck to stabilize it. C5-C6 haven’t fused and kyphosis has started again. He said it was a 50/50 chance that the surgery would stop the nerve hypersensitivity but considering this started after the original acdf as hypersensitivity to metals there’s no way that I’m willing to have more metal put in my neck. I think we’re in the same situation where our symptoms are falling in a grey area where no effective treatment is known and meds to lessen the symptoms temporarily are all they have in their bag for us.

I have experienced twitches, and if I am sitting watching tv my entire body will jerk.
Then different parts of my body will shake or jerk. I thought it could be a side effect of the medication I take: Lyrica. A relative of mine was on Lyrica and she had suicidal thoughts and had to get off the Lyrica.

What is CMT ? also, I'm on Lyrica for nerve pain and had spine surgery on March 1. On my discharge papers it just said don't take Oxy and Lyrica together, space them out 2 hours. But when I google is it safe I just get dire warnings. Anybody know what is right ?