1-Year Mark: Reflections & Thanks

juliette

Active member
Actually it is three days away but I am going on vacation and wanted to get this out!!! What a crazy ride this has been....Still twitching every day/every where etc...For the old timers and the doctors on this forum...What is the significance of the 1st year mark??? BTW...thanks for al the support this year...this group of people have really been helpful to me!!Steve
 
Hey Steve, ten years ago I remember being utterly convinced that the only thing left in my life was the slow and inevitable decline into ALS hell.I still twitch every minute of every day, though apart from the odd persistent twitch that happens every few months, I tend not to notice them any more.As for the significance of the anniversary. Well, after one year I was still in the ALS funk, so it wasn't that significant for me -- it took me another few months to a year before I came to terms with BFS. But for those who are still anxious about their twitching, I think it can be a good moment to consider their current symptoms and then look back and recall what they were like a year ago. If the symptoms are pretty much the same (as it was in my case) then that is a pretty good sign that you really do have BFS and not some progressively fatal disease. It took me longer than a year to get there, but whenever I get down about one of my persistent symptoms (and I don't just twitch, I have the occasional muscle weakness issues too) then I remind myself that nothing has gotten any worse over the last 10 years, so whatever is happening to my body, it isn't killing me,
 
Happy twichy birthday! I remember my 12 month anniversary as a helpful psychological hurdle. A bit like Tacitus, it didn't give me the complete reassurance that I had hoped it would. I am 15 months in now and remain somewhat anxious at times, more about the abnormal EMG I had than the twitching itself.RegardsSimon
 

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