Living with BFS Since 2001

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jakey43216

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I was diagnosed with BFS in early 2001. Since that time most of my symptoms have been limited to minor twitches in my calf muscles. No big deal, I just learned to live with it. However, beginning last December my twitches returned with a passion and in more locations. Also, I've been experiencing loss in muscle tone in my upper arms and my calf muscles cramp when I walk. Also, my shins are very sensitive and ache when I walk. When I wake in the morning I feel like I've been run over by a steamroller. My newest concern is that my butt has "fallen off" in the last two months. A family member noticed it. Should I go back to my neuro for more testing of just assume this is still BSF? Thanks in advance.
 
Hold up your BUTT has fallen OFF?????? Explain please! Do you want some of mine? No seriously. On a serious note. You've had this con'd long enough by far to now know if it was anything sinister. I have never heard of butt atrophy? not saying its not impossible...BUTT? (sorry no puns intended). I think Your fine.....Our bodies always change. :sick: Its getting older.
 
I'm 42 years old. Within the last 2 months my pant waist size hasn't changed but my rear has lost much of its shape - very flat. My pants keep sliding down like they're going to fall off. I've tried the next smaller pant size and they're too small. Weird huh?The other sympton I need to mention is that I have to be careful how I place my arms when I go to sleep. If I put pressure on the bottom of my upper arms, my hands will start to tingle and go to "sleep". This started a few months ago also.
 
Hello-On my original visit to my neuro I was having very bad tremors and my arms and hands were falling asleep. I could just be typing or when I would wake up they would be completely lifeless. On my first EMG they found that I had nerve conduction block on my nerves in both my elbows, which they said definately would cause the problem. Its the nerve in the little groove in your elbow at the bottom. So they told me that I cannot rest my elbows on anything and if it gets worse they might have to do surgery. So that should answer one of your questions because it has nothing to do with anything bad at all. When referring to muscle loss it begins in one limb and then other limbs. So before your butt would be falling off your arm would be in bad shape or other limb. If you arent having major "oh no my leg or arm is not working" weakness then its nothing to worry about at all. I should know I have thought that almost every part of my body was shutting down on me, but its only temporary till we find something else to worry about =) If you have not had an NCV done they can check out the reason for the numbness. Have you seen a neuro and had all that stuff done yet? Let me know!Sean
 
the "butt falling off" my girlfriend would be so jealous!! ;) For the hands, hmmmmm....is it a certain part of your hand that tingles....I know that certain fingers tingling sometimes points to a certain nerve that could be pinched, ie: tingling in the ring and pinkie fingers brought on my pressure in the interior side of the elbow could be from a pinched ulnar nerve, (from personal experience.) I agree, an NCV could def help point to anything like mild carpal tunnel, pinched nerves at the elbows, etc...Good luck and remember that I think BFS affects both Motor and Sensory neurons so you might get a tingle then a twitch, then a buzz, then a twitch again, etc.....B
 
The life expectancy of als is 3-5 years...therefore, you don't have that. And, as another person pointed out, atrophy does not start in the butt. That is not to say that it doesn't atrophy but mnd either first impacts the limbs or the bulbar muscles. So if you're otherwise fine then I doubt this is a disease process. Are you exercising less? Eating less? Lost weight? Your butt can be smaller for reasons other than a very rare disease.
 

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