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← Return to New to neuropathy, terrified and seeking advice from you guys
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New to neuropathy, terrified and seeking advice from you guys
Neuropathy | Last Active: Oct 23, 2022 | Replies (109)Comment receiving replies
@julbpat. I don't have anyone in my family that has had any of what I have. Not even my grandparents. This came out of the blue. I woke up with it which my neurologist said is rare. I have done a lot of reading on Mayo. Just an FYI to anyone John Hopkins has a library with videos about peripheral neuropathy. They have people who have put their stories on the website also. Birmingham is a few hours away from me. Before I go anywhere I will be making notes to ask the Dr. I wasn't really prepared when I went to the cardiologist/electrophysiologist. I do hope you get some answers in Birmingham. I may get another appt. to my neurologist and get him to do a referral. I have some more questions that he may be able to answer.
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My UAB visit yesterday was very satisfying. Dr Benesh sat and simply talked to me (and I’m sure watched all my fidgeting, rearranging, rubbing). I told him my story, and asked him to tell me about SFN. Since I am already doing a lot of PT, and using pain relief therapies that I’ve figured out, we ended up reviewing my medications - past and present. He knows my doctor here, and was typing notes as we talked that will go directly to him. They will communicate and work together. Such great news, and such a relief to know I have some coordinated medical care. Since he confirmed what I knew - that there is no cure, and will get worse - he said that we will continually tweak my medications. Right now my SFN symptoms ( burning toes, dizziness, palpitations, etc) are under control with Tegretol - which is another story entirely - but my overall pain is bad. Bad. He had some ideas of medication tweaks to deal with this.
I have dealt with this for seven years. The last 8-9 months I have had a rapid decline in my physical abilities due to pain, and subsequent weakness. It’s alarming. I feel much, much better to know that UAB has my back!