Thank you for accepting me into this group.

I’m looking for some guidance from those that have been here before. I guess my main question is, should I trust my supposedly expert Doctor and be resigned to my DX or do I trust my gut and demand further testing?

Here is my story
About 2 years ago, I got very sick on a business trip overseas. I recovered just fine. However, 1 week after my illness my ankles started burning. Eventually, I started twitching like crazy with it. Eventually, after bouncing from primary doctor to a rheumatologist, I made it to a Neurologist. She did a full exam and said everything looked good. We did a EMG and NCS which came back clean. She explained my burning was likely small fiber neuropathy, but that she wasn’t ready to dx me because she had no expertise in this field. She was young and inexperienced (guessing early 30's). I also got a MRI done which came back clean as well. So I researched and found the local expert in SFN. He specializes in PN and SFN, he also has a few papers he did on IVIG treatment for SFN. I got an appointment after 6 months of waiting.
He examined me and we did another round of EMG and NCS. He Dx’d me Cramp Fasciculation Syndrome. I asked repeatedly about SFN. He said he was 95% confident I did not have this because my vibration test was perfect and I had no loss of sensation. But what about this burning pain? He said it was just nerve irritation and quite common for CFS and BFS. Honestly, my pain is 1 on a scale from 10. I have read many with SFN that can’t sleep with sheets on their feet. I do not have this problem. It’s really just annoying pain.
However, 3 weeks ago, the top of my toe went numb. Like a dead nerve… I can’t feel anything on a very thin line on the top of this toe. I don't recall hurting myself in a way that could cause nerve damage... This has me worrying again about SFN. Everything tells me I should just get a skin biopsy and find out for sure. He insisted this was not necessary and that I should relax and enjoy life.

Here are a list of my symptoms

Both legs experience symptoms.
• Burning pain:
o Pain is mostly related to ankle area. Directly at the crease between shin and foot, where folds of skin occur.
o Secondary burning pain is located up to the mid shin.
o Burning pain to a lesser degree between mid-shin and ankle, and top of foot.
o Symptoms increase substantially while in seated position.
o The bottom of my feet and toes are not in any pain at all.

• Muscle Twitches:
o I twitch easily over 50,000 times a day.
o The vast majority of twitch is located in the calf area of both legs. Twitches are mostly unseen, but a minority can be seen. Twitching never complete goes away, but does differ in intensity from day to day.
o Less common areas include, quads, glutes, abdominals, biceps, forearm, neck, eyelid, and lats (back)
o Symptoms increase substantially while in seated position.
o Symptoms explode after strenuous exercise.

• Buzzing
o My feet and calves have a buzzing sensation that is nearly constant.
o Occasionally get buzzing in other parts of the body but rare
o Could this be high frequency twitching?

• Dizziness/light headed: (this symptom has been gone/very rare for about 1 year)
o Constant light headed feeling, but varies in intensity day to day.
o Worse when moving eyes from object to object. Worse when bending at the waist. Worse when I tilt head back. Worse when open and close eyes.

• Internal Tremor: (this symptom has reduced substantially for over 1 year)
o Internal low amplitude pulsing/shaking tremor can be felt for hours at a time. This signal is amplified when leaning against something… more so with arm held in higher position. This pulsing cannot be seen.

• Joint Tremors (This symptom is progressively getting worse)
o Thumb tremor when typing.


• Numbness
o Numbness first reported 7/12/17. Located on dorsal/medial side of large toe.

• Reduction in all symptoms reduce while active/moving.