Vets: Weigh in on Neuro Visit

[entszelizavetth]

I would love all you veterans to weigh in on this.Went to neuro today because of weird feeling plus twitching in leg.Here are some things that worry me that he said...1. He's only seen a few people with bfs in 20 years2. He wants to do another emg after a clean one just a month ago3. He said he has seenany people with als present with only fasics4. Clinical was normal, so why another emg5. Also is sending me to neuromuscular clinic...6. He said emg may have bee done too early.What the heck?

 

[flyboy101]

I'm sorry about your appointment. It seems that some neuros are better at the whole easing your mind thing than others. For what it's worth, when I had my EMG done I was 1 month into the twitching and he told me that by this point if it were ALS he would expect to find something going on in 3 or 4 limbs, but found nothing in any. That would go against what your neuro said. I also asked a different neuro and my flight surgeon, and was told by both that it was not too early. In fact, this other neuro said that what I was experiencing was very common and almost NEVER turns out to be ALS. He said my chances of having that were less than the untested population.Sometimes doctors do things out of "an abundance of caution," the words used by the second neuro when I asked why I needed a follow up in 3 months if everything seemed normal. The neuro that I went to for the EMG also told me that the reason for the follow up (believe me, I panicked when he mentioned follow-up) was just to be certain that something wasn't missed, but he wasn't worried. I had since transfered so I never did go to that follow-up and just followed up with my GP which coincidentally was the best doctor I have been to yet (another story).Finally, I did ask my neuro the whole thing about fasics being the first symptom. He told me that what he normally sees, is someone coming in whose spouse, significant other etc...noticed a twitch on the other person, then upon clinical exam, clinical weakness was found.Here's a positive for you to hang onto from your appt: your exam was normal! I have been told by numerous doctors that although they may not be able to tell what exactly was wrong, they would fully expect to find some odd things through the exam itself.Hope this helps a bit. Hang in there!!

 

[Gloria123]

This is just a guess, but I think because you're so afraid of this, that you're filtering out things that he said and focusing on only the things that seemed scary to you. Did the neuro give you no reassurance at all? If so, I'm guessing it's because he hasn't seen many BFS cases and isn't familiar with BFS (and doesn't have a good bedside manner either).Your clean exam is very reassuring. In fact, many people on here believe that it is the only exam you really need.And, yes, we all know that there can be people who twitch before weakness, but you're probably closing out on that window of time. My neurologist said after my EMG that twitching is not a symptom of *LS but a sign. So, if you go in with twitching, they don't suspect anything (he never called it BFS, but benign twitches, caused by who knows "irritated nerves", "anxiety"). But, if you went in and had clinical weakness (as a symptom) AND twitching (as a secondary sign), then they might suspect it.My doctor also said had seen someone with twitching who had googled it and came in terrified, about once a month. That's pretty prevalent for just one neuro. And that only includes the patients that see the doctors. There are probably those who twitch who don't even see a doctor about it.Anyway, I can see from your posts that you are going a downward spiral with your anxiety. I think you'll have more relief when you see the neuromuscular specialist. It will close out any questions you may of whether you have BFS or not (at least temporarily!).Mitra

 

[christinasgirl123]

It is a very good idea to see a neuromuscular specialist. Not because you need one. But because HOPEFULLY this guy will know more about BFS. And I also hope he is better in dealing with anxious people.

 

[Gracer]

practically BFS was not widely accepted 20 years ago. It is relatively new diagnosis. And this site might be a good proof that people with completely benign (not developing in ALS or whatever else) fasciculations occur in significant number all around the world. Not like few people in 20 years.Overall stats report about 4-5% of cases when twitches had been preceding paralysis or clinical exam changes. Well, if your clinical exam is Ok, why EMG should be too early? At least hey are consistent for now.I agree with Mitra that you maight unintentionally filter his words in a scary way (experience shows tha this happens really) and I support the idea to go to neuromuscular clinic for practical clarification.

 

[styx5690]

My neuro said he had seen a lot of people with benign twitches. He didn't specifically call if bfs but said it was common in people with health anxiety. He also mentioned seeing a neuromuscular dr but only because he thought it would calm me down, not bacause I really needed it. You're fine, no worries!

 

[writer08]

You can be reassured you are fine. I saw a neuromuscular specialist, MD, PHD at a major university who said that on average he sees 7 DOCTORS a year who twitch and think they have A&&&. I was shocked.