My neuro advised me against having an kind of nerve conduction tests or biopsies done; he diagnosed me based on blood tests, ruling out MS (MRI) and lyme disease etc, but primarily on symptoms.

I could have tests done if I so wished, but I have no reason to doubt my neuro; I guess the only thing a biopsy or such like might indicate is some kind of baseline level of damage that I suppose could be monitored over time. Overall, though, I am clueless about the procedures for getting an "official" diagnosis and what use it might be.

I have constant calf fasciculations that started about 4 months after my initial symptoms (odd tingling and buzzing in finger tips, feet, legs). The twitching never stops, just waxes and wanes a bit--had it for nearly two years; I also developed eye-lid twitching in one eye which has (thus far) been treated effectively with Botox injections.

Alas, my initial symptoms of paresthesias continue, but now with burning and occasional nerve shocks--in other words, potential for pain.

Paul

I agree with the others. (Probably not that big a deal to not get the skin punch. It seem like only a limited number of people do get it.)

The symptoms you described do sort of fit the type of odd symptoms that SFN causes. Mine started almost 5 years ago with a sudden onset of muscle tightness, then twitching and cramping. After many Dr. visits and tests still no diagnosis, but almost certainly SFN. Things got better but still some foot pain. I take some Gabapentin to control it. I'm still working in a job that keeps me on my feet a lot.

It seems no two people with SFN experience exactly the same symptoms. And no way to predict if it will get better, stay the same, or get worse. (The people who frequent the forum here tend to be ones with ongoing and progressive issues, but I think that's because the ones who get better don't see the need to continue coming here.) I like to come back at least once in a while to check in and let people know it's not necessarily doom and gloom

My neurologist said my EMG/NCS coupled with examination was plenty of proof of my impairment and for some time, it satiated me. Eventuallly he agreed to do a punch biopsy and it showed evidence of severe small fiber neuropathy. Having the numbers helped me, and honestly given some recent, unrelated medical testing I’m glad I have it.

I’ve had an endo/colonoscopy in the last month and both times encountered wide spread ignorance from the medical professionals involved. Endo it was the anesthesiologist, who really asked pointed questions. I actually ended up talking about the results, though as likely I was sensitive, as no meds for quite some time then.

Shout out to the two nurses who asked why I was uncomfortable looking and then seemed extra tender after.

Colonoscopy had a small reminder of how awful sfn can be in ways you don’t encounter daily. The nurse ignored my pointing to where the IV went for endo. “i’ll decide where” she states, seconds before collapsing a vein in my hand. It felt like a hot needle was in there for at least 15 minutes. Same for the spot in my other hand. She got help, who made a third spot burn. Super pro was then called in, no pain.

The first nurse kept apologizing, and I kept absolving (holey Thursday, eh?) and all went well enough after, but so many had no idea about neuropathy, at least related to a somewhat younger looking fella, who still moves around rather convincingly, unless you know him well.

Anyway, I think if it will help someone feel their way through living with this, the paper could aid you.

My best,

Jon

I appreciate your insights, Ragtop. Like the OP, Sarah, the fear of how things might progress is as psychologically insidious as the physical symptoms. It's reassuring to know that one reason these boards seem so quiet is that a percentage of members recede into the distance as symptoms naturally quieten down.

The unpredictability is a real curse. My paresthesias have taken a turn towards the burning and painful in a period of less than two years.

I'm taking resveratrol as well as B vitamins and fish oil in the hope these might have a stabilizing effect until, I hope, proper treatment comes along.

Ragtop: what is your daily dosage of Gabapentin, please?

I was at 1800 mg/day, but had some side effects - sedation, etc.) I tried to slowly taper off and was able to go down to 600 mg/day. Any lower than that and the pain in my feet hot pretty bad. So I'm at 600 mg/day (300 in the morning and 300 before bed). 600/day is considered a very low dose for Gabapentin - but it takes the edge off for me, and the side effects are minimal at that does. But, everyone responds differently, so don't assume you would get the same results.

Does anyone get really bad cramping in their feet with the buzzing and twitching?

I have a cold and my symptoms seem to really be getting out of control.

I'm not sure what to do anymore. I am losing a bit of hope

magnesium has worked well for the cramping i get....i still get cramping but much less.