6 Months of Twitches: Reflecting

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F

Frumpy

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This weekend marks my 6 months of twitches, jerks, soreness, and stress. 5 months ago when i came across this board i was jealous of those who made it 6 months because i thought "well they must know for sure they don't have anything serious by now." I had strong logic for other peoples conditions. I mean after 6 months of twitches, a clean bill of health from a neuro, and a clean EMG a person must know its not ALS. Funny now that i have made 6 months i know say it for those of you who made 1 or 2 years. I still twitch a lot. Mostly in my calves but also in my back, face, and chest. And I still have muscle jerks in my hands and fingers. I don't have any real weakness (at least none that is obvious) I still run 2 times a week and play softball on Tuesday nights. I still watch my beloved Vikings lose (but i dont care nearly as much...i guess i am gaining perspective) So i am upbeat that God has not let these symptoms progress to weakness but i am still stressed and concerned about my condition. I guess this is the battle we (or at least I) face everyday.
 
Yeah but just think of all those people who read this post and say "This lucky b*stard has had it 6 months! I've only had it 2. Why I can't I be as lucky as him??!?!"With BFS it is about perspective. Always remember where you came from and how long you have had it and how nothing has changed. That's the best way to adapt in the early days.
 
Good point (as always) Mario. I think you once wrote that very very few people fully recover from the twitches (meaning they go away). I hope mine will but if it doesn't i know what we face everyday is really nothing in comparison to what it could be.
 
If they go away, great. If they don't go away, no biggie. And no, there's no "what it could be" because BFS doesn't turn into that. BFS is BFS. It sucks, sure, but it's only as bad as you make it.
 
My dad said for the most part his went away. He still gets a twitch here and there. He told me the other day he had a bad one in his thigh. He thinks its because I have been talking about it to him that he even noticed. My dad was diagnosed with BFS at an ALS clinic in Georgia in 1994. He had horrible mind wrecking twitches for two years and then it stopped for the most part. I have always had a twitch here and there but not constant and nothing like what started in April. In April I knew something had gone terrible wrong. The twitches were horrible and non stop from May-July. Then at the end of July they tapered down. I have had one thigh twitch so far today. I have about 5-15 twitches a day. I again had them for years but it was only one every few months which I know that's not BFS that is just a random twitch. I also am starting on my 6th month. I never thought I would be one to wish my life away but I did when I first started having these symptoms.
 
Hang in there I have been twitching for 7 years now but it has improved over time. Good sleep and exercising has really helped me cope with it. I was scared at 6 months and had most of the symptoms you have and I am still here 7 years later. so take a nice drive or treat yourself to a walk or movie. Not much we can do about them but just know many people have been in your situation. :)
 
You made it to six months! A huge milestone for sure. Coongrats! Stay strong and healthy and keep your chin up, even if it twitches :D) RBear
 
well done on getting to 6 months, probably the hardest 6months you will do. It is tough to start, but you do start to accept things as they are, but it takes time. I am sure the next 6 months to your next milestone wont seem any where near as long as the first 6. Stay strong and think positive thoughts!cheersRodger
 

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