Fasciculations - SFN
 

Just wondering if anyone gets fasciculations (muscle twitching) and has small fiber neuropathy (not tested) but have had Tilt Table Test done and have been diagnosed with POTS so they are sure that my tingling of hands, feet and face are SFN. I also have falling asleep hands and legs at times. Anyways, with the fasciculations is that normal with SFN? It just started about 2 weeks ago. I have had it under my eye, in my hand, in my leg. It will do it for hours straight, almost continuously and then be gone as fast as it came. Then maybe 2 days later it will show up in another place.

My other annoying symptom is my left thigh on the outside is tingly/numb or itchy at times. I have also noticed some weakness in my right arm and leg. THey did a brain MRI and it was completely fine (I have sarcoidosis and they ruled this out in the brain). Has anyone had SFN cause weakness?

So dumb me looked at fasciculations on DR GOOGLE and ALS popped up and what are it's symptoms...fasciculations and weakness. I would like to think that my sarcoidosis with SFN at 34 years old is causing my symptoms and not ALS, especially since I have tingling and POTS. Just wanted to see if any of you had similar symptoms and what helps them. I am on Gabapentin 300mg once a day and Topamax 100mg twice a day.

Thanks!!!

I have SFPN. Fascinations everywhere randomly. Apparently this is not supposed to be part of small fiber neuropathy since motor nerves are involved. I wish my doctor could explain that part too. I also have weakness and extreme muscle fatigue and pain. ALS, so I hear, doesn't come with as much pain as this. I've been like this since 2013/14 when it blew up and I haven't deteriorated any further or relapsed to the state I was in at the onset. Trying to take it a day at a time is the name of the game.

Yep - I get muscle twitches. I have them a lot. These days it's not uncommon for me to have a muscle twitching at almost every minute of the day. I can't say it bothers me too much, but I've always had muscle twitches. I'm in the process of being diagnosed one way or another with neuropathy, but I realize now I've had issues for a long time leading up to the severity it is at now. Right now my scalp is twitching, right above my right ear. It's been doing it for a few days straight. But I also have random twitches all over.

Honestly, if I woke up tomorrow and my arm has fallen off, I don't think I would be the least bit surprised. It almost feels like every day is a new thing that I never saw coming. Sometimes I wish I had some way of knowing how bad it's all going to get for me, but I guess I wouldn't really want to know. I try to keep a shred of hope.

Yes, my husband gets them randomly and as quickly they go. He has small and large fibre and motor neuropathy. He's had it for 13 years now.
He also has vibration feelings quite often - quite a few years ago he had that for the first time when we were in Vegas - he thought the bed was vibrating, then he thought it was an earthquake!:)

This week his PN has been very bad with the hot humid/windy weather we're having and I watched his back thigh muscles continuously contract and release - he was not a happy person.:(

So all in all not unusual, just the ongoing, never ending symptoms of PN.

Just some thoughts and questions.

I have SFN and fasciculations all over. The most 'fun' place is my tongue. I like to show my wife when it happens and it freaks her out. :)

I wonder if the fasciculations are part of SFN or it necessarily means motor involvement, because I've had 3 negative nerve conduction studies. I think if it's not part of the SFN, then it's part of the underlying disease process, which also causes my joint, muscle and bone pain. They suspect autoimmunity in my case.

During the six months that I was most consistently on my strict ketogenic paleo diet, the fasculations pretty much disappeared. I've now started back on the strict diet long term and I can say that before I did so, the moment I'd eat too much carbs or anything else not on the diet, say dairy or grains, the fasciculations would increase and appear in never before seen areas, like my tongue, which started only a few months back after eating chips.

Let's see what happens when I'm back on the diet strictly for a while.

It's hard to tell--
 

--as "benign fasiculations" are common in the general population, even among those without other signs of neuropathy or other neurologic disorders.

Technically speaking, pure small fiber neuropathy would not result in fasiculations, as the small fibers only subsume sensory function of pain and temperature and most autonomic functions. But, it should be pointed out that not many, if the analysis goes deep enough, are found to have pure small-fiber neuropathy. Most are found to have predominantly small-fiber neuropathy but there may be some motor involvement, though the involvement may be minor or sub-clinical. (Many people with small-fiber neuropathy also have minor, sub-clinical autonomic symptoms from time to time.)

There is ALSO the possibility that the extra fatigue of muscle that one will have when dealing with any nerve problem--it often takes more and different muscle energy and usage to compensate for sensory problems--might result in fasiculations from time to time.

Generally, though, such fasiculations are not harmful. One should be more concerned if one has non-stop fasiculations in larger muscles or has noticeable weakness in the muscle. For instance, the reason cervical spine surgery is being contemplated in my case is that, pain symptoms aside, there is a small but definite comparative weakness in the extensor muscles in my right upper arm and shoulder compared to the left one, and recruiting those muscles for resistance tasks, such as pushing outward against someone trying to push my arm in, produces pain and fasiculations. If this does not improve through physical therapy I will likely need to get the narrowed foramen at C6 and C7 re-expanded through disectomy, oesteophyte removal, and fusion.

For what it's worth, I've worked on ALS clinical trials at work. Just like cancer has an ECOG scale, ALS has something similar - a scale that tracks how the disease is progressing and how it impacts the patient's daily life. Even patients that have significant disease process don't tend to have a lot of sensory symptoms. Your list of symptoms do not sound like the typical ALS patient. :)

My symptoms came on hard and they were full body. I couldn't control my legs when I was driving and I couldn't walk sometimes. I had to lay on the ground a lot. I thought for sure that I had MS, since it had been suspected in the past (MRI in 2005). I also had heart issues - palpitations and elevated heart rates while sitting and extreme fatigue. But the weakness in SFN is a "perceived" weakness or at least that is what I've been told by neurology. I guess that does make sense.