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About Victoria

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  • Birthday July 24

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  1. Thanks Julie. It means a lot to me. Knowing what I have is the best medicine ever. Oh, and I'm sure it isn't ever final. A roller coaster. . . . Hugs to you.
  2. Hi Naomi. Yes, my diagnoses are based on nerve conduction testing. I can't decide which is worse, the small or large fiber issues. One would be enough to deal with, but luck of the draw I guess. I think my SFN had progressed long enough that it showed up big and bad on nerve conduction. My neuro made it sound like SFN is usually hard to detect that way. I also think you can have normal QSART test results and still have SFN, so don't give up. Your burning feet seem significant. I started out with shooting pains in the tips of my toes and burning feet. If I were you I'd cut to the chase, save yo
  3. Thanks to both of you. You're all so sweet. I forgot to add Cymbalta. She also prescribed that for the neuropathies, but I can't afford it until after June 1st.
  4. My final diagnoses are large fiber neuropathy, small fiber neuropathy and autonomic neuropathy. My neurologist prescribed Mestinon, Neurontin and Alpha-Lipoic Acid. I'm not happy, but at least I can put my questions to bed for now. She didn't think I had CIDP, but she doesn't specialize in it and may have never seen a case before. I may see a CIDP neurologist some time in the future, but for now I just need to chill.
  5. And no body told you and put you on a treatment plan? My neuro at the time (2 hours away) thought I had Myasthenia Gravis and she prescribed Mestinon. Some time later I ended up being hospitalized in CCU at the UIHC with respiratory insufficiency and some muscle paralysis. They started me on prednisone and sent me home. I ended up back in CCU with the same problems and they prescribed prednisone. While I was there they ruled out MG with a repetitive nerve stimulation but didn't do any other electrodiagnostic studies. Heck, they didn't ever use a hammer on me to test my reflexes. If they had, t
  6. I found one of my electrodiagnostic tests from 2007 and the conclusion is I have an asymetric peripheral polyneuropathy. Features appear for a mixed neuropathy of both axonal and demyelinative type. On the nerve conduction test I have absent right and slow left sural sensory nerve conduction velocities, reduced peroneal CMAPs and reduced left peroneal distal motor conduction velocity. I'm going to try to find someone to help me. It seems I may have Chronic Inflammatory Demyelinating Polyneuropathy. In the meantime I'll continue taking the Alpha Lipoic Acid.
  7. "Well your sort of missing it. Large fiber nerves are mostly your motor nerves, allow you to move, etc. Small fiber nerves are the ones that control your autonomic function as well as the more commonly known nerves that cause painful neuropathies." Dang, I knew that. They're on separate circuits. I don't know what in the world I was thinking. Small fiber = autonomic nerves. DUH! Gee, can the brain be involved in CIPD? I definitely don't have MS. And yes, I have polyneuropathy. I've had everything from large muscle groups being paralyzed to having mild respiratory paralysis to just not being a
  8. Awwww, thank you. They're relaxing for sure. Mine knows when my BP/HR are going haywire and when I'm not feeling well. In fact, he sometimes knows before I do when I'm going to have a big crash. I'm sure some will call me crazy!
  9. I won't have supplemental insurance again until June. But I should be able to self-refer wherever I want. BUT I was forced to go to the University of Iowa because I was once again deemed "too complex." I have no one in my corner right now. I've exhausted the private practice pool in my area. Rest assured, I will NOT go to psych or allow psych to treat me for a condition I do not have. I have all of my medical records — boxes and boxes of them, and when I forward them I do not forward physician comments. I only forward test results. I'm contemplating going to Wisconsin right now until I can get
  10. I'm big time confused Lyn, I'm having a brain foggy day. Is Froedtert Hospital part of the Medical College in Wisconsin? Is it at the same place? Like St. Mary's is part of Mayo Clinic in Rochester? P.S. I hope you have a good doc (well known in the Autonomic community) lined up at Mayo and you have a stellar experience there.
  11. I've searched but don't see a full autonomic lab at the UIHC where I'm currently going for health care, so this is great information to have. Thank you Lyn.
  12. Awwwww. They're usually calm and soothing little dogs. Male or female? What's his/her name? I do think mine is adorable. Even with the Christmas tree coming out of the top of his head! This is Carter:
  13. For now I'll take your beautiful bloom and hug my warm puppy. I have a little Papillion. I can't tell what kind of dog you have on your lap. Is it a Shih Tzu? If so, they're wonderful little creatures with good manners. It also helps to know I've finally found my home — this forum. Thankful, Victoria
  14. Crazy statement for an internist to make, isn't it? I know it isn't true. I have reason to believe they're trying to go the Munchausen's or somatization route. I do understand I have the right to have my pain reasonably controlled. If I can get him to believe I'm in pain. "Believe" is the operative word here. I'm afraid to ask for Paxil or any of the antidepressants that may help with pain (for obvious reasons). I'm going to a large teaching hospital (not by choice). Unfortunately, they've treated me poorly in the past. But maybe, just maybe I'll have a fighting chance if I can get to their p
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