BFS vs SFN
 

Good afternoon.

First post. Happy to join your forum.

Just looking for a little advise I suppose.

So, about 7 years ago I got some twitching above the ears. It was first on the right side, then the left. The twitching was rapid, like a machine gun. I found this all amusing. It went away after a few weeks.

It returned a couple of years later, same as before, for a few weeks.

It returned a third time in march 2016. However, this time it was different. The twitching was slower (like a shot-gun) but lasted longer (twitching episodes might last an hour or two). It started in the right, then moved across to the left, then was left or right. It also affected my sleep a bit as I sleep on my side as it's like someone tapping me on the head.

I noticed from there, a greater amount of twitching around my body, all random places, for a few seconds, minutes of hours. The twitches would stop once the muscle was activated (if possible) only for them to start again when the muscle relaxed.

The twitching peaked in May 2016, when I firstly noticed a odd sensation on the front of my shin. I then noticed tingling in my right foot, then my left. I also had a prickling (think prickly heat) feeling around my body, especially thighs and back of hands.

I had no other symptoms. I went to the GP and was eventually referred to a neuro, who gave me clean bill of health after a physical exam (he said he'd never heard of anyone twitching before¦hmmmmm!!!).

I was happy with that, I didn't was a condition anyway.

Over the past 2 year my symptoms have decreased¦all except the tingling in my feet.

My twitching etc is classic BFS¦but chronic tingling in the feet is more classic SFN is it not?

Other than the tingling, I have no other symptoms of SFN. The video below talks about the main presenting symptoms being pain (although some class tingling as a form of pain), hyper sensitively to pain (bed sheets), inability or decreased sweat, a reduction in ability to feel sharp or dull pain, inability to feel heat/cold . I have no burning pains (hot or cold)

(search "#Small #fibre painful #neuropathy Causes and Treatment" on Youtube)

I am also only 35, thus 30 years younger than mostwith SFN (according to research).

I currently live my life as normal, as before I had any of the above.

My tingling is mild. I can go days, weeks and probably even months without thinking about it (or if I notice it, I dismiss it as quickly as that). I only feel it when I'm still. I feel it less when in bed at night, and sometimes have to try to find it in the morning¦. But it is there¦still there¦not getting better, but not getting any worse.

I know the only way to know for sure is a skin biopsy, but being in the UK, with my mild symptoms, I'd be very surprised if I am ever granted one of those tests.

Just wondering what people's thoughts are about my situation.

Thanks all.

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 :D

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!

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.

Sorry, I just remembered I had BFS!
 

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.

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?

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