Hi to All!

I know some of the current participants have never interacted with me at all.
Some of the older members have. I am here off and on throughout many years of neuropathy. Over 25 years now of neuropathy sx.

A brief history: My neuropathies have been diagnosed as sensorimotor in nature in the past, with some autonomic involvement. I now am quite sure of much more autonomic involvement. I have not has NCV/EMGs/SSEPs for about 2 years now. (I have been totally medically disabled for the entirety of the 25+ years.)

I get worsened neuropathy with many drugs used for neuropathy.
In fact, I am reasonably sure this entire situation was made worse by allowing the use of some drugs. Many drugs make the neuropathy so incredibly bad that the docs then start to panic.

I have shown them time and time again, that if/when I agree to amitriptyline, to the SSRIs, SNNRIs, the anticonvulsant drugs, etc. -- I get worse within two weeks. The neuropathy flares up even worse... amping up to being on fire! This quickly ascends up my lower limbs, and now my hands and arms, too.

My last neurologist was openly expressing shock when I had showed him how quickly an anticonvulsant drugs will set me ablaze. (I had demonstrated 2 of them for him. I have tried all of them.) The testing he did had also confirmed this to him. (He is in private practice and is also certified in doing the EMG/NCV studies himself, so he did take the time to prove worsened testing behind what I was reporting.)

Cycleops, I, too, have been repeatedly dosed in high does of so many drugs that have been neurotoxic to me, as a part of my "treatment," only to keep getting worse. For all of these years, if I'd report increased pain, they would prescribe an increased dose; yet, I would never get any reprieve until the drugs were stopped and I was given time to heal the sfn.

When we have stopped the meds, I have had periods of sfn healing, proven with skin punch biopsies, etc.

Then enter another med, for another reason, an antibiotic or something ... and off we go! The nerves start burinng again and everyone wants to start prescribing all of those drugs yet again. Once I was onto this pattern, I found a neurologist willing to listen and also willing to set up a trial whereby he would evaluate the changes. He is convinced I cannot use any of the (many) meds often used for neuropathic pain.

You will see some of these drugs are well-known for med-induced lupus. They set off some kind of an autoimmune reaction for some. I am one of the "some," unfortunately.

Please be very careful and find ways to try to track this with meds. I hope everyone has a doctor as willing to listen as my last one has been. Prior to finding him, I was simply considered non-compliant because I would not take those neurotoxic meds anymore. (This was even though the prior neurologist had seen me willing to try high doses of anything he would prescribe for years.... until I had started to see the patterns by discontinuing the meds and getting sfn healing, etc.)

Please be careful. We may not all react the same way to all meds. However, please be very, very careful.

(I have lots of damage now. I believe the cause(s) of the damage have been mutifactorial and will write more about this another time. However, I am also sure meds have made some aspects much, much worse. I have never had a neuropathic exacerbation in the past without prescribed drugs in my system. Since the drug was not recognized as neurotoxic, they thought there was a separate neuropathy and would introduce yet another neurotoxic drug! Polypharamacy was giving me neuropathy much more than treating neuropathy. It eventually becomes such a mess that it can be very difficult to sort out.)

Take Care!
~DejaVu