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Aug 16, 2018 · Seeking help, information, support... in Neuropathy

I was diagnosed with Hereditary Inflammatory Neuropathy, which is a type of peripheral neuropathy. Took 3 years to get diagnosed as it is a slow progressive disease and my tests did not start to abnormalities right away. It took a lot of tests, consults, and medications to figure out what works best for me. I will either do IV prednisone (methylprednisolone) or oral prednisone when I have a "flare up" which happens with illness/allergies/etc. That combined with pain meds, Effexor, and (Xanax- only while on prednisone). I will get numbness, weakness, and pain at first and then as my nerves start to heal in my hands and feet, that is when I get the tingling sensation. Takes 1-2 months to heal and it probably happens every few months or so. I have also found that sleep is the best medicine. I take two 50 mg of Trazadone and 20 mg of melatonin and I go to bed and get up about the same time every day. Even though I have a progressive disease and am losing strength on my left side and now is starting my right side, I still work full time and I am raising 3 daughters. The Effexor has really helped my attitude and helped with pain. I have tried many other medications but the treatment plan I have now works best for me. I am very blessed to have a neurologist that really listens and works with me.