GolferGalaxy
Well-known member
Hi all,I still visit this site but not as often as I once did. I see the only thing that changes are the screen names. The stories are all the same. I just wanted to provide this community with the obligatory update! I'm alive and well! Nothing has really changed......except my fear of having als. I won't go into my complete history (please read my prior posts if your interested) but I will give you all a brief background summary.Everything started for at the beggining of September in 2007. I think I actually had symptoms in August but didn't pay attention to them. I have most everything mentioned on this site. Currently I suffer from occasional twitching, persitent instant muscle fatigue upon minimal exertion, my muscle also visibly shake instantly upon exertion and the buzzing internal sensations. I was never a 24/7 twitcher but I do twitch more than the average person. The twitching does fluxuate. Some days very very little some days more so. However, the fatigue is alwasy present. I had all the tests and they were all negative.What has changed - my fear. I was in a pretty bad place for probably 3 years. It has slowly gotten better and now I can say I'm 95% over my fear. I'm 5 years in and my conditioned has gotten any worse. That doesn't happen in als. I know something is wrong but it's not als.What's helped - excercise. When all this began for me I was involved in a rigorous excercise routine. Working out twice a day, etc. Weight training, cardio, etc. I often wondered if this may have caused my symptoms. Anyway, I began excercsing again back in March/April. All I do is walk but I walk 5-7 miles 5 days a week. This has been great for my mental state of mind! Endorphins are wonderful!I still visit my Neuro from time to time. We've experimented with different meds but nothing has worked. I still take clonazepam about once a week. Sometimes I feel like a plugged into an electrical socket. This drug calms that down. I had clean Neuro exam about 5 months ago. He says I'm still completely normal. I think he senses my new calmness about my situation. I think he actually believes me (I've always felt he thought I was crazy). He even said I think something is going on with your body but it isn't fatal. So now I have come to terms with that fact that my body is ot normal. It sucks and there are things that are hard for me to do. However, I'm not dying and that is an enourmous relief. My advice - listen to your doctors, excercise moderately, eat healthy and try and live your life as normal as possible. I understand that people will never know what we go through. I always feel like I have been keeping this secret. I know it's hard but we aren't dying. The sooner you all accept that the better.Take care and feel free to PM me if you have any specfic questison.