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Neuropathy pills: How to avoid scams?
Neuropathy | Last Active: Dec 5 7:41pm | Replies (75)Comment receiving replies
Hi John - 6 years ago they did an EMG and saw Severe Axonal Sensorimotor Peripheral Neuropathy, then did the standard checklist of autoimmune and cancer bloodwork and found nothing, do the label Idiopathic was added. I have never had an MRI or skin biopsy, as it’s believed they wouldn’t add any useful information on diagnosis or treatment. The Gabapentin prescription is pretty much the only assistance I get from Neurologist, though sometimes they check my basic arm and length strength, and see if I still don’t have knee/elbow reflexes. The Gabapentin I take comes in a 800mg tablet, and I try to keep them 8 hrs apart. I’m lucky that pain, when it comes, it isn’t a 10, it’s can get to 5 or 6, just enough to know it’s not comfortable and you can’t take your mind off if it, so the medicine can make you maintain at a 0 to 2 all day every day if I’m on a good spell. But if my fingers/toes get cold, that’s the worst type of pain a heating bag and gloves couldn’t cure - the iciness was bone deep, so helpless. That’s the biggest help from Gabapentin for me; it has made those episodes much less frequent and more tolerable when I get a little. Heat like you’re experiencing also happened with me, but to a lesser extent. I can’t avoid the outside temperatures, and I guess it’s because I don’t sweat that makes it tough for me, but it was worse before Gapapentin.
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John: I noticed in what you wrote that you say you do not sweat. My family has a disease called Fabry that has impacted about half of us. One of the symptoms is your body does not sweat. You also get a great deal of pain that feels like neuropathy. Not many doctors are aware of this disease but there are more doctors now that know about than did 25 years ago. New York Sinai can do DNA testing to determine if you have fabry. Iowa City's university hospital is aware of this disease and treat it for adults through their pediatric clinic. I don't know why they do it all through the kids clinic, but they do. Cleveland Clinic is suppose to have some doctors that know about the disease. But those in our family with fabry were diagnosed by New York Sinai Hospital which I think was one of the first to be able to test for it. Any DNA provider can do the testing if a doctor orders the DNA test for fabry. The doctor may not know anything about fabry as far as treatment though. There are treatments but none that get rid of the disease. They treatments just slow down the progression. People with this disease are missing an enzyme and with it missing fat can accumulate in all organs. It is especially known for hurting the kidneys and heart. You may want to consider contacting a doctor that knows about fabry and be tested. To my knowledge there aren't many diseases that stop sweating which had my brother's doctor know what fabry was could have had my brother tested as a child. Instead he was 30 before he was tested by a doctor that knew about fabry. I lost a sister to fabry at age 42 before fabry was really recognized by doctors. My brother only made it to age 51. A niece and nephew have it and their treatments having been started when they were younger are doing quite well. I'm no health care doctor/nurse, etc. Just the knowledge of what I have accumulated because fabry has hit some in our family. Best wishes for a healther life.