Hi - I am a new member on here, but have been dealing with BFS, anxiety and the ALS scare for 6.5 months now. (A 'Saint' or 'Senior' member on here my want to read my post and further advise or correct anything).I can definitely relate with you, about the symptoms coming back and with them the fear. I am in the same situation right now. Example: I found this post because I searched for 'breathing'. I have been almost symptom free for a little over a week (even twitches died down to a normal level). This week, though, I've been having shortness of breath. I don't have problems breathing normally, but notice a shortness of breath when I talk. I feel like I run out of air. On top of that, I've been feeling this throat sensation I had a few times during my BFS life, but that has come and gone away. It is like a sensation of crawling and swelling at the top of the back of my throat.So this old throat sensation is back, with the shortness of breath symptom (which is new), and I'm freaking out again. I've been looking up respiratory onset A'** and, well, my anxiety is out of control, even though I know the following:- I have no weakness or atrophy. In ALS, these are the hallmark signs.- Symptoms with ALS do not come and go.- In most ALS cases, by the time respiratory issues are present, there are other clinical signs, unless it is the respiratory onset version, which I read is something like only 2% of ALS cases (so rare of the rare).- My chance at 33 to be diagnosed with ALS is miniscule, and then to have it and have the respiratory onset version of it is even more miniscule (so yours is even off the charts miniscule).- I did go jogging out in the cold weather on Monday because I finally felt better overall (after a long time of not being active), and that, along with a case of post nasal drip, is more likely related to my shortness of breath than ALS.It seems this is my cycle:1) Symptoms are present (either old ones come back or there are new)2) I google (which is a bad habit but is not needed as much anymore since I know so much over ALS already)3) I freak out, panic even, which in itself is traumatizing, and I take medicine to calm down. In this step, I annoy everyone around me. I also ignore or forget all positive facts that I know (above).4) I wait and monitor the symptoms - test them, evlauate if it's getting better or worse (this is where I am at right now)5) Once I feel they are getting better, or are not progressing, I can finally unclench and begin to relax a little (A** does not come and go)6) Then I look back and realize I freaked out over something totally normal with BFS or whatever the symptom was related to and I apologize to everyoneMaybe you or others can relate with my cycle. I wanted to write this to let you know I feel what you are going through. I also have had the pain in my hands which feel like they are about to cramp, the pain in my legs and butt, and the crawling feeling in leg (different than a twitch), all which comes and goes. When I do have twitches, they are mostly in my legs.One thing that helped my leg and butt pain: it seemed in my case the leg pain was caused by my butt muscles being too tense (why would I or any of us on here be tense, right?
), and they grabbed on to nerves affecting my legs. I had a couple nice deep tissue butt massages (just one won't help much), and everything eased up.I hope you found some sort of help in my post, even if it just made you feel better that I've had exact symptoms.
