Welcome, Burnsie! Though I'm sorry you have to be on here at all.

I'm not on here often anymore, but I noticed this and wanted to respond. I am also in my mid-30s, and have both full-body SFN and BFS. I determined what the latter is and that I have it on my own. I then explained the link to my neurologist, who actually thanked me for it and asked for the studies I had found. I can't seem to find that list now, but a quick Google search turned up one such study. Here it is:

Benign Fasciculation Syndrome as a Manifestation of Small Fiber Neuropathy (P1.139) | Neurology

Sadly, with the vast majority of neurologist you'll be on your own and reaching in the dark. I've had to do almost all my research myself over the years and ask for help on here and elsewhere. But as you can see BFS and SFN are connected, so you're not alone. Some speculate that the decrease in small nerve fibers in SFN cause BFS.

I hope this helps, and good luck!

Hi David Thanks for the reply. Of course, I wish I wasn't here too. I'm kind of in catch 22 at the moment,. I want to know that this is all I have, that it probably wont get worse. I want to know if I need do have SFN and/or BFS... But i don't want to know at the same time, if you get me!

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.

Hi David. I think it's only my "chronic" tingling which is not consistent with bfs.

I am living a 100% normal life, and want it to stay that way, which is why I kind of want to know what I'm facing, even if it turns out there's nothing I can do. The fact that it's remaines stable for 2 years is probably a good sign.

I live in the UK... So I doubt I'll be able to get a biopsy on the NHS due to the fact that I am young with only mild symptoms. But then people with more severe symptoms would possibly not need a biopsy to confirm?!? So basically, no one is allowed to biopsy

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!

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.............

If most people with BFS also have SNF, they should really stop calling it a benign condition they should really stop calling it a benign condition!!!!

Interestingly over Christmas my sister mentioned that she think she has BFS. We have never spoke of any medical condition before and this was completely out of the blue.

However surely with something so rare and misunderstood, there has to be a link here too!!

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.

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!