Welcome to Our Support Group

[mistymac]

Title says it all. Hello everyone!! I don't know exactly how I found you all, but it is a blessing to be here.I too have spent a few years trying to find out what was going on with me. Started as just a minor gait issue.....had a complete physical and all was normal. Then it got worse....for a while. Then it disappeared for 4 days. Came back ....this went on for months. I have seen 3 neurologists and have gone thru every test and scan imaginable. Every thing was normal. I just knew I wasn't. I told the neuro's everything that you guys and gals have experienced (big toe twitches, thigh muscles twitch enough to see thru my pants, legs ache constantly, extreme fatigue doing simple tasks, numbness that seems to move around.....etc) and nary a word was ever said about BFS. One of the neuro's was the head doc at a major teaching hospital!Unfortunately, I am one who has significant pain and must use a cane to walk. My legs become so heavy and painful that I have to sit after walking only less than 50 yards. ( If you are wondering, my PCP says my pulse in my legs is fine.....).So imagine my delight in finding a place where I can now realize I am not insane...LOLI guess I now have to get doctor to consider this ---> someone who actually believes it is a real syndrome.Now off to read more posts.Tim

 

[MarioMasher]

Hey Tim,Welcome! Good to see that this forum can be a savior for another person. I know it has certainly saved my sanity over the past few weeks. In fact I have even joked about this with my neurologist. I keep telling him he should put "It's just BFS - " at the bottom of his business card. I figured that would save him a lot of unnecessary reassurance visits.By the way, I wouldn't sweat it if you can't find a doctor who will actually "diagnose" you as having bfs. From what I have read, even neurologists are sometimes mixed as to whether they consider it an actual diagnosis it or not. I have read that some of them just consider bfs to be "advanced anxiety." That's not to say that what you (and all of us) are feeling aren't real symptoms. But as to what causes it, now that's the million dollar question that no one can agree upon. Is it anxiety? Is it virus related? Is it vitamin/mineral related? Is it a physical defect in the nerves somewhere? Do we even all have the exact same thing? No one seems to know for sure. Just keep in mind that as long as your doctors tell you it is nothing serious, then that should be good enough to get some peace of mind. By medical definition, all normal muscle fasciculations are supposed to be "benign" anyway, so some doctors might feel it's sort of redundant to refer to it as "benign benign fasciculation syndrome." That's the way I have always looked at it, anyway. I haven't actually been diagnosed with BFS either.And no you aren't insane. At least, no more than any of the rest of us, anyway. Enjoy the asylum. )

 

[mistymac]

Thanks for the reply......the only need for a actual diagnosis is to help financially as I can not work more than part time and even that gets to be a struggle. And I have never been one to be effected by anxieties.....way too laid back for that. ( If you remember the 60's, you weren't really there!) It's just real assuring that others are having the same issues and none of us are committed to a looney bin yet!

 

[papillon58]

my neuro will not call it a syndrome-- only benign fasciculation.....in fact he said "you dont have a syndrome "--just for what it is worth--my digits sometimes move too--

 

[AllGoodHere]

I was diagnosed with benign cramp fasciculation syndrome. My response was .... huh? At the time I didn't care much as my symptoms weren't that bad and he said it would come and go and may go away. NOT. That was almost 2 years ago. I go back this week to see if he wants to update that. The next guy I saw said he wasn't going to write it up as a syndrome because it would look like a pre-existing condition and I may not want that on my insurance records.......I think he didn't look very closely at my records....Sigh, we're fish swimming in muddy waters.

 

[mistymac]

Marvelous......the American medical society just isn't what it use to be. What you are all saying, or at least what I am hearing, is that finding a doctor that recognizes this as a real problem will be as frustrating as the last three years I've had trying to at least find what is going on with me. I haven't gone thru many of the posts yet, but perhaps some have had better luck with their doc's and can recommend an approach. At this point, I have an appointment with my wife's PDoc in a few weeks and we are going to discuss my mental state in regard to disability, 'cause I sure am getting no where with the other doc's.

 

[AllGoodHere]

Really, we are the sum of our parts working together - it's just that it is hard to find a doc that can see you that way. If our bodies were cars we'd have to go to one shop for the drive train, one for fuel systems, another for brakes, etc. and would spend months just getting the oil, brakes, and wind shield wipers checked and changed. Alas, bodies are complex compared to cars and you just have to keep trying to find the right shop!