Benign Cramp Fasciculation Syndrome

I have been living with this for more than 20 years. I was diagnosed in 2015 by Mayo. I take Tegretol 200 mg when I go to bed. I am allowed to take 3 Flexeril daily, but I have taken myself off that. I still have the twitching and mild pain, nothing like before. The cramps and pain have been mostly on my left side, but they are starting to migrate to the right side. I get them in the back of my thighs, calves, hands, biceps, stomach, neck, sides, and toes. Oh and my left shoulder rolls forward and locks. I tried Baclofen 60 mg a day, but that didn't work. I can handle the twitching, even the spasms as long as the pain stays around 5, but when it was up around 9, it was exhausting. I just try to enjoy every day as best I can. I work 55 hours a week, sometimes more like 60 to 65, but I manage. My family doctor works with Mayo and when I left Mayo in 2015, they told him if the Baclofen wasn't working to switch to Tegretol. My bodgy seems to tolerate it well. I too have had many surgeries.

Hello. First time poster long time viewer. Question for anyone who'd like to chime in. I've been dealing with muscle fasiculations for over a year now. My calfs are pretty constant. I also have some exercise intolerance and fatigue. I've seen two neurologist and have done two EMGs within the past year which were both normal. They both said I was suffering from benign fasiculations. I did a bunch of blood work as well. Was Considering coming to Mayo for a third opinion. Was wondering if anyone could chime in. As I was worried about mnds and I know normal EMGs and ncs point away from those.

Hello @jhn48110 and welcome to Mayo Clinic Connect, although you joined some time ago but officially just posted today for the first time.

You will notice that I have moved your post into an existing discussion on the same topic so you can connect with other members like @birdbeep and @wendycad who have both commented recently and who may be able to share their experience with you as you look toward what you feel is next in your healthcare journey.

That said, you did mention you are considering Mayo Clinic for a third opinion so did want to share that you may use this link if interested in pursuing an appointment: http://mayocl.in/1mtmR63

Based on the appointments you've had with the other neurologists and the results/feedback they've shared, are you thinking this is something else or that there is more going on?

Hello. First time poster long time viewer. Question for anyone who'd like to chime in. I've been dealing with muscle fasiculations for over a year now. My calfs are pretty constant. I also have some exercise intolerance and fatigue. I've seen two neurologist and have done two EMGs within the past year which were both normal. They both said I was suffering from benign fasiculations. I did a bunch of blood work as well. Was Considering coming to Mayo for a third opinion. Was wondering if anyone could chime in. As I was worried about mnds and I know normal EMGs and ncs point away from those.

could possibly be small fiber neuropathy which is not determinable by EMG, only a skin biopsy. My SFN started with calf fasciculations and burning toes but I think there could be numerous causes.

@helennicola would the EMG show if the fasiculations were from something bad?

I think the EMGs just determine large fiber nerve impairment, you would probably have to see a neurologist for a determination of cause and possibly lab work.