Living with a Chronic Condition

[MahwahFresh]

I know that we are all so lucky so far to have an "all clear" from our doctors. I admire the courage of those who have been diagnosed with a life altering conditon . I don't put myself in anywhere near the same category as them.. But, I still feel like this bfs stuff really stinks. I am tired of going to my kids' birthday parties and hoping I will still have strength next year. I am tired of feeling o.k. only to have a muscle twitch in a scary place and start back where I was before. I know I shouldn't, but sometimes I visit *** websites. I always end up scaring myself all over again. I examine my muscles, find a difference and spend the whole day comparing. I know things could be a whole lot worse, but this is a very hard condition to deal with. I keep telling myself that in a few years, hopefully I will be past this and I will be a much stronger person. We are all going to be o.k., we have been able to look at life and gain a new perspective. I am so glad that we have this site so that we know we are not alone.

 

[BarbiePetals]

I feel the same way. I have been cleared by 2 neurologists have had a EMG, Brain MRI, numerous bloodwork that has all come back normal yet I still get scared as to what this really is. The twitching drives me crazy. I hate it. It's been 7 months and although I'm over the ALS fear, I wonder how I'm going to live with this for the rest of my life since it does not show any signs of going away. I just hope somehow I can learn to live with it. I love when I have good days but then they are followed by bad days and I get down all over again. Hang in there. At least we know we are not alone.Leslie

 

[BetteDavisGretchen]

Mahwah_Fresh,I have twitched in every possible place as well . I am almost 3 years with BFS and my muscles are actually stronger now than they were 3 years ago. As each day passes I try to focus on the fact that I am ok, and although yes it certainly does suck to have a body in a constant state of twitching...I am grateful to be a healthy functioning person.I am amazed when I read the posts here how much we are all alike and truly are not alone Take good care,Wanda

 

[NinaC2005]

Hey mahwah--Two years ago this month, I started down this path. Listen to your docs and to common sense. Kit, a physician and long-time member of this site, always told us that when you hear hoofbeats, think horses not unicorns. That is, ALS is not a disease of twitching (my neuro's words), but of weakness. Real weakness, not gee, I-suddenly-feel-like-I can't-deadlift-a-Prius weakness. You will be fine, but to get the awful anxiety under control, stay off the ALS sites, WebMD, Google, etc. My GP told me at the outset of this that when he was in med school, he was convinced that he had all manner of scary, fatal diseases--always AFTER they had begun study of a scary, fatal disease. He was convinced that every normal ache or pain or palpitation matched a symptom from something he had just read about. BFS isn't normal and has real physical issues associated with it but the anxiety that comes from self-diagnosis or just plain old fear of the unknown can be the biggest challenges of all here.Hang in there--you will be OK. I didn't believe that myself two years ago, but your symptoms sound just like mine and a thousand other folks here--it ain't what you fear. Spend your time on the internet at e-Bay or The Smoking Gun, not the "other" sites.Mark

 

[TempleHall1]

This may sound crazy but sometimes I'm almost glad I twitch. Reason being that due to undereducated first neuro I was 90 percent convinced for about 2 weeks that I had the ultimate evil disease, started planning how I was going to handle wrapping up my business, selling house, breaking the bad news to loved ones, etc while I could still walk. But after more reading and strength tests I gradually realized the neuro was an idiot, got another one who confirmed BFS and what a glorious revelation that was. But as time passes one tends to forget the agony and later glorious revelation of living .... but the twitches serve as a sort of constant reminder of that time and to not take life for granted.