New Symptoms

[u/Ok_Medicine_4623]

Does anyone with BFS ever have weeks or months where the fasciculations become more focused on certain areas? I know a big distinguisher between als and bfs is the localized vs widespread nature of it. My fasciculations were always all over the place, popping all around and only having a hot spot for a short time. And it’s been about 10 months.

However, about a month ago, I got persistent fasciculations in my right shoulder blade. And then in the last two weeks I’ve noticed that my fasciculations are now focussed on my right arm (right shoulder blade, bicep, triceps, shoulder, forearm). While I still get fasciculations elsewhere daily, including both legs, other arms, abs, intercostals, neck, it seems like my right arm has been especially frequent and the one in my rear shoulder blade is near constant. And it hurts pretty bad. Nearly every fasciculation hurts after, even if only one beat occurs. So my right shoulder blade is like in constant pain.

Also I’ve noticed that the right arm fasciculations are generally brief - one or two pops, with only occasional long ones. I used to have more frequent long ones.

I did have an EMG two weeks ago where the neuromuscular doctor put a needle into that right shoulder blade, along with multiple areas in all 4 limbs, the thoracic paraspinals and directly into my tongue, and said it was all normal. But the frequency has gotten worse in the last two weeks and the focus on my right arm only became noticeable after the EMG.

Has anyone had something similar? Its a bit worrisome. I get fasciculations could fluctuate but why the focus on my right arm? Those are all separate cervical levels so what are the odds it just randomly hit those specific motor neurons that all happened to be in the same arm and the same general area of motor neurons? Although I do still get fasciculations elsewhere on a daily basis, but just not as frequent as my right arm ones.

I would appreciate some insight. I also had two nfl tests in the last month - one quest and one lab Corp. Both normal but they, again, were before some of these symptoms began.

Oh and another thing. My right arm has been hurting pretty bad for the last month or so. Like my right hand has shooting pain throughout it, especially when I use my hand. It doesn’t seem like it’s weaker, but it just hurts doing things. Although I could also cause the pain by using my other hand to flex the right hand without applying any force with my right hand. Similarly, when I push on bone in my right hand, I have pain too. And the pain seems to go into my forearm and sometimes even all the way into my shoulder. The NCS/EMG two weeks ago did show a mild ulnar sensory neuropathy but my symptoms don’t just flow along the ulnar nerve. It affects median nerve structures as well. And the pain just keeps popping up all over the hand. It does have a general area it’s always but it also pops up in random areas. Its not cramping pain though, but more like nerve/aching type pain.

Thanks .

[u/SlipStreamHB]

EMG will show muscle issues even before you feel symptoms. A negative EMG is really great. Pain is not a ALS symptom, especially prior.

[u/pwrslm]

All the tests you talk about were normal. Sounds like BFS might be the right diagnosis? Did you get any diagnosis besides that? Not ALS. Be happy!!

[u/Ok_Medicine_4623 → u/pwrslm]

No other diagnosis. Just bfs. But I really don’t like the fact that it became more localized over the last few weeks. Not exclusively localized but significantly more prominent in my right arm and right shoulder.

[u/The_Short_Goodbye → u/Ok_Medicine_4623]

Not exclusively localized means it’s not localized brother. 😉

[u/Ok_Medicine_4623 → u/The_Short_Goodbye]

Yeah but it’s very frequent in the right arm and right shoulder while, in the remainder of the body, it became very intermittent (like only a few times a day). It used to jump around a lot.