tredgoon14
Member
Hello Guys, I'm still very new here (1 month in) and I have an update that I hope makes many here feel good.First quick recap. I started with non-stop calves, then it moved to my thighs and hamstrings..random twitches all over my body. Many I could see some I could just feel.I was vfery stressed and conviced I had ALS. I went to 2 neuros and had an EMGBoth diagosed me with BFS. I was told by the 2nd (in practice since 1986) that it was not too early. If there was a clean EMG there was no worry. Both said anxiety feedsthis.I started taking a prescribed anti-anxiety med. I also clamed down a bit but still worried about new issues, weak legs, tight and sore calves and thighs. then my arc on my right foot started twitching non-stop. I started werig socks 24/7 so i wouldn't see it.Now....the good news I hope.I went for a follow up. My calves went from keeeping me up at night becuase constant twitching to just a few random pops I almost don't notice anymore.I had some very specific questions for my follow up yesterday. this doctor has a great pedigree (Emory, Harvard, and Duke)1. Do you agree that if my EMG was clean it could not be too early? H e said yes-the twitches if caused by ALS should show on an EMG. If I had two clinicals and a clean EMG and still had the disease I would be the first he ever heard of. He said, remove that thought from my mind. He said you don't have that, but we do need to improve your quality of life2. I was concerned about my righ foot. He looked at my foot that was still twitching at the arch...he said "thats beautiful" 
very common place3. I was worried that my right calf has a different shape than my left, like a dent. He said he saw that..."that is you"That is all. He then measured my calves. He said my left was bigger....by 1/2 a centimeter He said peoiple without anything usually have up to an inch differnce. No worriesHe was wonderful. He asid you have BFS...nothing else. He said if its not better then in a month he might put my on a mild sedative to relax the muscles and see if that helps. Hes going after the BFS...nothing else. I would say after I have calmed down after that first VERY scary week my BFS has improved...with new thing that freak my out...like the right foot. My wife makes fun of me and I try to move on. PSTurns out my neighbor had this for 4 months...she said the rick was forgetting you havr it..then one day she noticed it was just gonePSS-in ATlanta there was a radio show about health last week. My dad heard it and guess what they were talking about??? My dad called me and said he listed for 2 hours with people calling in talking about this. He said it sounded just like me. What are the odds. Doctor on the radio said 2% of the population will have BFS at some point of their lives. 2 out of a 100 is NOT that rare. We just need to continue to try to remind ourselves what thyis is.I hope these have been comforting words. God Bless
very common place3. I was worried that my right calf has a different shape than my left, like a dent. He said he saw that..."that is you"That is all. He then measured my calves. He said my left was bigger....by 1/2 a centimeter He said peoiple without anything usually have up to an inch differnce. No worriesHe was wonderful. He asid you have BFS...nothing else. He said if its not better then in a month he might put my on a mild sedative to relax the muscles and see if that helps. Hes going after the BFS...nothing else. I would say after I have calmed down after that first VERY scary week my BFS has improved...with new thing that freak my out...like the right foot. My wife makes fun of me and I try to move on. PSTurns out my neighbor had this for 4 months...she said the rick was forgetting you havr it..then one day she noticed it was just gonePSS-in ATlanta there was a radio show about health last week. My dad heard it and guess what they were talking about??? My dad called me and said he listed for 2 hours with people calling in talking about this. He said it sounded just like me. What are the odds. Doctor on the radio said 2% of the population will have BFS at some point of their lives. 2 out of a 100 is NOT that rare. We just need to continue to try to remind ourselves what thyis is.I hope these have been comforting words. God Bless