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@kdm511

Hi, I just joined Connect and am so sorry to hear about all you each are going through. I do agree with John. I also joined the Foundation of Peripheral Neuropathy when I discovered them online a few years ago. I have Neuropathy I developed on dialysis, however, I was severely abused on dialysis and they caused a fall out of my bed that injured my spine. I had severe Sciatica and a few months later as things progressed I saw my Physiologist and his partner did an ENG. It revealed I developed nerve damage down both my legs, I have annular tears and crushed disks , and Sacroilliac Joint Arthritis later developed from that fall. I transferred centers and a year later their wonderful Dialysis RN I knew for 10 yrs, told me she thought I had Neuropathy from Dialysis. It was then I began Gabapentin at 100 mg. A month after that I received my kidney transplant and I have been taking 900mg daily since. Its a miracle drug. Since then, which was back in 2014, I have been prescribed Tramadol which I try only to take it when its absolutely unbearable. I had been prescribed Tramadol by my Primary Care Doctors but they retired. Well, suddenly this year the Transplant Center Pharmacy said the Gabapentin was no longer being filled by the Transplant Center. Before the operation, things got confused as I had transferred the med down here to a local pharmacy. So all that time my local Nephrologist prescribed it when I thought it was the Transplant Center. Ha Ha. I take so many pills I just include it in my pill box. Well this was a happy accident as I learned from this when both Doctors refused to continue prescribing Gabapentin they said I needed to see a Neurologist for it! That was a complete surprise to me. Yet, it was also another happy accident as this is the exact Specialist needed for prescribing Tramadol and just in time to refill my prescription as I no longer had a doctor since my PCP retired. That's important because Tramadol is a Neuropathic Drug and is the only medication that works for my pain. Knowing its the brain that is in control of my Neuropathy any futher developments I now have the right Specialist to guide me through it. When I read about your horrible reaction to your medication, it reminded me of when I was given a Lipitor a few months after my fall out of bed and oh I had such a bad reaction I had Restless Leg Syndrome and a fever for 2 weeks. I was very lucky that stopped. However, I was misdiagnosed when I was 22 and that med given to me at the time blew out both my kidneys instantly only I did not know until I was 38. Its a matter of finding the right Specialist first to define the actual cause and that unforunately takes time. Once you fine the correct Specialist they can accurately diagnosis and provide the right medication for it. It took me 38 specialists in 8 months, 20 yrs ago, to find out I had kidney failure in both kidneys. My Rheumatologist did a blood test and he sent me immediately to a Nephrologist of which I had never heard of. I had never been sick a day in my life. Recently I found out my Mother has Neuropathy too but she is 88 and doesn't know how she got it. So that leads me to think that if not a coincidence, my Neuorpathy may also be hereditary. I would suggest since the ENT you just had done, the electrical test where they put the needles on you, that perhaps a Neurologist would be the one to pursue, since it was just confirmed you have severe Neuopathy. Starting from the top down, the Brain down the Spine, may be of help to you. Perhaps it will save you a lot of time hunting doctors and causes as well. He may be able to help you most. Tramadol also is an SSRI which coincidentally also helps anxiety so that may help kill 2 birds with one stone. It will get you off those other types of anxiety meds that cause severe side effects. Gabapentin is an Anticonvulsant and Tramadol is an SSRI but both are Neuropathic drugs. In my own experience, they work wonders for me. I recommend seeing a Neurologist. I hope this helps. I so hope time goes by as fast as it can to get your pain under control. I am so sorry you have to endure this. Wish you well!.

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Replies to "Hi, I just joined Connect and am so sorry to hear about all you each are..."

Hi @kdm511, Welcome to Connect. I'm happy to hear that you already knew about the Foundation for Peripheral Neuropathy. Another good site for learning about neuropathy is Neuropathy Commons: https://neuropathycommons.org/.

Thanks for sharing your story. It's always helpful to hear the experiences of other members. Is your neuropathy pain pretty much under control now?