Living with Uncertainty of ALS

RyanBabz

Well-known member
Hello everyone. I joined this group way back in 2005, when I was positive I had ALS. My symtoms actually started in early 2004. I went through doctor after doctor never being convinced I was healthy. I have had every single symptom probably most of you guys have....twitches, tremor, hyperactive reflexes, etc. in every part of my body. In fact, I still get them, but I honestly don't worry about it at all. Anxiety brings out a lot of stuff. You guys are all going to be okay! Mark my words. I remember how bad I felt back then, and how it made me feel better to read responses from people who had been there a while. Well, my advice is to stop worrying: they're probably here to stay a while, and they definitely won't go away when you're constantly worried about them. As I sit here now, I can think of so many things I missed out on and so much of my life that was latered from the constant worry. Don't let this control you!Regarding meds: the only medication that helped me at all was Alprolazam (Xanax). I took it for years daily, and eventually stopped taking it altogether. I still have an occasional anxiety attack, but not due to worry over my neuro system. I'm just susceptible to them. I don't know if it's viral or what, but I believe BFS starts from a buildup of negative energy (or stress) released by hormones in the body (adrealine, etc.) and eventually some "channel" or sort opens up and can't properly control the amount of stress hormone. BFS can get really bad during stressful times as you know.If you guys have any questions: did I have this symptom, that symptom, take this, try that, etc....just ask. Chances are, I have. It took me a long time, probably 5-6 years, to accept that I was okay. Don't waste precious time worrying about this stuff. :cool: Ryan
 
Thanks for the reassurance. My BFS also came after a stressful event in my life. I'm going thru alot of those things right now, questioning if there is something wrong with me. Did you ever have perceived weakness or just a shaky sort of feeling in your limbs?
 
I have had perceived weakness and a lot of shaking every since it first started. I remember after weedeating the lawn or even mowing, how my arms would shake so badly for hours afterwards. I still do it, but it isn't as bad and I pay no attention to it. Your mind will play a lot of tricks on you with this stuff: if you're thinking about it constantly, you'll feel every single symptom, including the perceived weakness feeling.I know it is very tough after first, even for the first couple of years, until you are assured you are okay. There were many on here like me back then telling me the same thing.You will be fine... ;)
 
Thank u Ryan, I love these posts....I'm a year into this so far, would love it all to stop, but realistically know it probably won't....thank u for the reassuring post and great to her your doing so well... :D)
 

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