I have SFN and in November was given the diagnosis. I also have 3 small brain lesions in 2 frontal temporal lobe and one in left temporal lobe. About a year ago I had an episode where Ioss my vision and had extreme heaviness start from my head down to my toes. My cognitive function declined, heart rate a d BP spiked. ER doc thought it was TIA. 1st nuerologist did not, 2nd nuerologist didn't either. MS thought it was all psychological.

EMG was normal, no one wanted to help me. Foot surgeon, rhumetology, neuropsychologist, eye doc, all said it was neurological. It was the foot doc that pushed for EMG. After that came back normal my 1st nuerologist released me. MS doc thinks it may be early stages of MS, but referred me to neuromuscular doctor. I had to the outside of my hospital system to get SFN biopsy. That came nack postive for moderate to severe SFN. Doc tried me lyrica and it didn't help. I take gabapentin now 300 mg when I can tolerate it.

I get what I would call muscle stiffness in my feet and ankles after resting. I have to walk it off, its painful. I have spasms I'm my hands and arms where i get severe pain and my hand or arm.goes limp. Happens in my ankles to when I walk. The worse is the pain i get in right chest area that radiates to my upper right back that feels just like a constant throbbing and squeezing. It's only happened twice. I get terrible facial tingling and vibration and sudden jolts of hot pins in my eyes and around my mouth area. Every now and then I get a tingle wave from head down or leg up. I get bloated and nausea at least once a week.

I get the traditional SFN pain. The more I move the worse it is at rest. If I rest I still have pain just not as intense as when I am.active. I am 44 years old with a great career, husband and two beautiful little girls 4/6. I don't know what to do anymore. No one is helping me understand this or why it's happening. Since the original episode ER doc thought was a TIA I have gotten worse. The tingling and burning and muscle stiffness and facial tingling started several years ago, but it was minor. It has progressed a lot since 2013.

Anyone out there can shed light on this?

Tricia

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