Originally Posted by DavidHC

I hear you. I've had this for a few years now and all I can say is that it can get easier to deal with, when you realize that even if it gets worse, it's not necessarily a death sentence. From the sounds of it, you have a relatively mild form. It may get worse, but there are some for whom it is so severe that they cannot live even semi-normal lives. Now, I don't know the cause of your illness, so perhaps it's worth pursuing it, especially if you're worried about it getting worse. In some cases it does, in others it improves, and finally in some it simply stays the same. Over time, it can get easier to deal with, and the anxiety tends to dissipate somewhat. That's not to say things ever go back to normal, whatever that is.

Given your description, it doesn't seem like all your symptoms are consistent with only BFS, and that some of them are consistent with neuropathy. What you would need and should pursue, if at all possible, is a skin punch biopsy. I live in Canada and so it wasn't easy for me to pursue it, but I saw three neurologist until one realized what was needed and sent off a sample to the States. So all I can say is that don't give up, since you're your own best advocate.

Originally Posted by Ragtop262

Hi Burnsie:
I have similar symptoms. I've always had various little twitches, but 4 years ago I started getting some tightness in my legs, which turned into twitching, then cramping, then pain and tingling in my feet. After the obligatory google search, I was sure I had some horrific disease - but testing failed to show anything serious. Most of the twitching and cramping has receded, and I'm mainly just left with low level pain and numbness in my feet. Life goes on, but a little different than before. I take a low dose of Gabapentin to moderate the symptoms a bit, and some supplements which also seem to help a bit.

But, I have always been intrigued by the overlap between SFN, BFS, and Fibromyalgia - the common denominator being damage to small fiber nerves. (Lots of people with BFS and Fibromyalgia show small fiber damage on biopsy - and lots of people with SFN have twitching, cramping and pain that can also be symptomatic of BFS and/or Fibromyalgia)

If you do a search, you can find a few old posts where I have brought up this issue.

Unfortunately, none of this information seems to bring us any closer to an effective treatment, so.............

Originally Posted by DavidHC

Tingling can definitely be a sign of neuropathy.

I'm glad to hear you're living a normal life, and I hope that continues. It's difficult to know how it will develop, which is why it's good to try to get to the bottom of things. But that's not always easy, and it's a good sign that things have remained stable for two years.

I get that! It's unfortunate. Well, perhaps there are others on here from the UK who can help you out on that front. I certainly can't. Either way, good luck!

Originally Posted by Loucharj

Hi burnsie

I’m new here too. I got my biopsy on the nhs - my neuro wrote to Professor Anand at Hammersmith asking for the biopsy and included copies of my clinic notes and I got an appointment letter two weeks later. I had the biopsy last week. Wait time total of 4 weeks.

Good luck.

Originally Posted by Burnsie

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!

Originally Posted by Loucharj

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.

Originally Posted by Burnsie

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!