Wow, quick work...what were your symptoms?

Mine are mild, and i'm young (for PN), so that's why I expect a battle...but i'm thinking after 2 years, I at least need to be able to rule something in or out...it's no good, whatever this is, starting to progress in 2 more years and I could have stopped its progression!

It took me a year to get this far. I’m 35 so young too. I have full body burning, stinging, twitching, POTs and autonomic problems, GI issues, it’s pretty full on and very debilitating. It came on fast (4 weeks last year) and my feet are now permanently numb. The pain however started in my shoulders after the Gastro stuff . I’ve seen 4 neuros and it took me a long time to get them to believe I was not making it up. Once my cardiologist diagnosed POTs he sent me to a better neurologist that got the sfn ball rolling.

My symptoms began with what I thought was Restless Leg Syndrome. A few months later began the burning in my legs and hands, tingling and random stabs of pain which are symptoms of SFN. But now I do recall that I would be sitting in bed watching tv with my husband and I would get these strange movements in my upper arm. I felt like I had been possessed. My husband would watch in disbelief. Sometimes they would occur above my knee. They would usually last about 5 minutes but sometimes they would go on for more than an hour, go away, and then come back on the other arm or leg. They went away after a few months and I had forgotten about them.

Four years later and what I'm left with is burning in my shins, left hamstring and lips. It's always present, but the degree differs. I also have RLS sensations some nights. Enough to wake me up, but if I stretch out the muscle it will usually go away. I take something to sleep most nights so it's hard to gauge how bad it really is.

Whats POTs?

I am sorry you are suffering. I suppose the only hope is, that as you're sti;l young, all the medical advances will one day be able to help (I know not a lot of money is spent on SFN research, but maybe MS research will hold a key).

In terms of me? Well, I haven't really noticed it during the weekend, and had to think about it a couple of times (it's still there of course).

So, given my sentence above compared to how much pain you are in, why should a GP give me an appointment to get a skin biopsy when there are so many people more needing than myself. I wouldn't and shouldn't!

because if you find out what you have early you might be able to take steps to slow it down or keep it from becoming worse.

I suppose another way of thinking about it, surely they would want to test me, someone who has initial symptoms rather than someone who is pretty much clear cut, 100% with burning etc.

I have noticed a slight burning my left foot and other issues over the past week and a bit, but am putting that down to my brain. Just way too much of a coincedance. But will book a GPs appointment.

Burnsie you are as important as anyone else. take good care of yourself and advocate for yourself because no one else will

Burnsie

In general bfs has not only the symptoms of twitching.
It’s more than only twitching. Tingling is possible. Lookup aboutbfs there are a bunch of folks with it.

On the other hand bfs and sfn are well connected.
Here in Netherlands we have in Maastricht a specialized sfn clinic who covers Europe. The guy who I spoke said. Listen, in general for sfn there is some kind of underlying condition. Diabetes. Sjogreb, thyroid or vitamins imbalance. In 30 percent we don’t know. We believe they are genetic or other cause

POTs is where your heart rate increases when your standing or exerting more than it should. So say I’m laying down my HR is 60-80. Standing I jump to anywhere between 100-120 and if I get hot or exert myself like getting dressed, it skyrockets. Some people pass out. I’ve come close but I don’t. It’s ehere the small nerve fibres have affected your Autonomic nervous system.

If oh want the biopsy why don’t you go for it? Could find a cause and potentially stop any progression?