Thank you for sharing-I always noticed a numbness in my right foot big toe but never thought much about it. Next came the bubbly feeling in my legs at night but still never made much of it because I felt fine during the day. Always had tinnitus as long as I can remember. Sometimes when I over did things I would get numb feeling in legs but it would go away. I have had acid reflux for decades. I also have had optical migraines for decades. Two children-two c-sections and a hysterectomy at age 32 (fibroids). Myofacial pain syndrome off and on for years. Occasional bad muscle spasms in back. Last December I was sitting at the computer for a long time. I am a photographer (a hobby) and was working on a job. When I got up I had huge pain and saddle paresthesia. At first doctor treated it like muscle spasm but then I started getting more bubbling and tingling and burning in legs-thighs and feet. Felt like I was walking in potatoes. Numbness came next in feet and legs this never left. No sleep due to pain. GP ordered a MRI of my back. Everything looked ok. Next I began with tingling in my hands just little pings. The back pain came next upper back. Everything hurt Everything felt so odd and confusing. Tingling and burning scalp-I could not even explain it all to family or doctors sometimes I thought I was crazy. How could all this be going on in one person. That is when I was sent to a neurologist for Emg and needle test all normal . Lots and lots of blood work all pretty unremarkable except low IGM. Three more MRI’s with and without contrast and a skin punch biopsy. All were normal. I finally agreed to try gabapentin ( not a fan of meds) but my life as I knew it was gone. The gabapentin helped a little I went very slow with it. It took months to work up to 1800 mg I still had pain. Next we tried Nortripline 10mg and worked up to 30mg.Things were a lot better. I still could feel all the strangeness and paresthesia but the pain was a lot less. I have slowly tiered down on the gabapentin and am holding at 900mg. Things were better I felt like I got some of my life back and started doing some things again. I felt better even with this strange new body and all its sensations. Sadly -lately I feel worse and have faciculations and lots of cramping. I get these waves of chills too. Here I go again. Noew my neuro doc has ordered a sensory motor noropathy panel it gets sent to the University of Washington lab. I have to pay for it out of pocket-pretty expensive.I don’t want to have anything really bad but I want an answer because I’m scared and don’t know where this is going. It is such a double edge sword. I am sorry you are going through this too but It is nice to talk with someone who understands.❤️ Take care-hope this wasn’t to long of an answer.

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