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Neuropathy | Last Active: Aug 16, 2018 | Replies (30)

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@kristine522

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.

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Replies to "I was diagnosed with Hereditary Inflammatory Neuropathy, which is a type of peripheral neuropathy. Took 3..."

Hello @kristine522, welcome to Connect. Thank you for sharing the treatment information that works for you. It's great to have a neurologist or doctor that will work with you and listen to your concerns and how you are feeling. Sleep really does wonders to help rejuvenate and get you ready for the next day.

Has your neurologist offered any suggestion on what might help you build your strength up on your left side and the right side?

Thanks again for sharing what works for you.

John