i do not but i hope you and your doc can find something to help with this.
sending you good thoughts!

Hi Freelee, It is important to see the right specialist. I once asked my rheumy for head ache meds and she referred me to the neurologist. The neurologist gave me the correct meds. Be sure to see the correct specialist.

Sometimes a doctor will not jump in with a medication right away. I have a smart cardiologist that waited and saved me a lot of money. I had an enlarged right side of the heart at the beginning of my DM. My heart returned back to normal size, so no meds were needed. Your doctors might be waiting to see which direction the illness will go before determining a medication.

I always look up the different medications and treatments for a particular diagnosis. It gives me time to think, consider any costs, and look at different treatment types for a condition. If you look up and read about treatments and medications for the Trigeminal small-fiber sensory neuropathy and the Sensorimotor polyneuropathy, then you can consider the treatments available and your situation at this point.

Best Wishes.

Hello - I have "severe" (so they say after the epidermal nerve biopsy), non length dependent small fiber neuropathy, and motor as well.. I get IVIG for it, but also take plaquenil.. and for me it felt like I had creepy crawly stingy ants on my skin.. I mean sometimes I sware something is on me.. but it's just misfiring nerves... I woke up every few minutes having to shake my limbs for months, i was sooo exhausted.. they put me on lyrica in addition to the above meds.. and that has saved my sanity! I actually can sleep much better now.. when it wears off i feel like stingy creepy crawly sensations again... Hope you can get some relief! (my motor function returned after the IVIG)

My understanding is neuropathy is not part of Myositis. It could be that you have a another condition causing it. I agree a good doctor can help you get the root of the problem and hopefully help you find some relief.

I have never heard these terms, but then doctors speak their own language. I am finding that most of them have no idea what we have or how to treat us. My pain specialist writes RX for me, but doesn't examine me to just sit and talk with me for a while to see if there is something different he may be able to do for me and the severe neuropathy in my legs, toes and hands that never goes away. It would seem that he would want to do something more than write RX for the same meds that I continue to tell him does not work. I am better able to walk, but with a lot of pain. I can't even stand up straight. I am bent over like an old woman. My toes will not bend and I can't fit my feet into a pair of shoes, not normal shoes. I still have the stomach of a woman who is 6-7 months pregnant and the muscles in my stomach still churn like they are moving something along. No answers for me there either. I just pay my little money for copays so they can document my charts that they have seen me in case the disability insurance company asks for my records. I sit here not knowing what is going on inside my body. A study in progress.

Thank you all for your kindness and replies. I am up late tonight with extreme tingling and pain in all my legs and hands, reading what you have all written to help me. Cheers.