Scared of ALS: Twitching Thigh & Weakness

[hustleace2]

I just cant shake the fear, I started twitching in my right thigh 3 weeks ago, went to 3 dr's nobody said yes to my ALS question, went to the neure and have EMG Monday, scared as hell, the only thing I have is the twitching, I have been doing squats on my right leg for a week now, I can do more than when I started, problem is I already have waekness in that leg due to broken kneecap surgery in 2006 and never did any strenght training to get back to normal, so when I test my strenght is hurts, and then makes me all confused, I cant stop thinking Monday will be the beginning of the end, I read on here that waekness always starts first, then I read on here about 4 paitents that twitching started it.Am I alone in this fear ir am i just being ridiculous and dramatic?Thanks for your time and support

 

[JohnnyRocket]

Does everyone come here thinking ALS? No, not everyone but lots or most do.Are you alone in this fear ir am i just being ridiculous and dramatic?You are the opposite of alone in your fear, and given the grip our fear can have on us I do not believe you to be ridiculous or dramatic for that reason. Anxiety aside, however, your fears are very ridiculous because they are not based in reality. Had you no knowledge of ALS, your situation would be very, very different.

 

[christinasgirl123]

Hi Duke, I guess at least 95% of people that come here are afraid of ALS, the Rest of MS. I mean, how could they not be scared? What happens to a body with BFS is sooo weird and definately scary. And it is so odd to call that all benign, when it is scaring the hell out of you. I guess, having a first time migraine is also scary and because it is such a strong impression, many people are probably thinking they have a brain tumor. The important step will be to accept the benign diagnosis and go on with life. But what you definately cannot do with ALS is IMPROVE your strength in that leg. That is not possible!. One of those very rare 4 cases that presented to his doc went there because he had twitching and he was complaining about not being able to make an improvement in training/building up muscles, no matter how hard and often he trained. So no matter how weak that leg is compared to the other one due to your kneecap surgery, if you can build up strength there your nerves and muscles work perfectly!

 

[FantasticFurball]

No. Not everyone joins this forum becourse of ALS-fear- Some join it as well becourse they are afraid of Parkinson and MS. I have even seen a few being afraid of cancer, herpes and HIV. Has this site been active in 1914-18, we would have had some who feared being victims of poison-gas as well. With that said some of us joined the site AFTER the worst fears where gone OR becourse we wanted to know more about our dx. It is possible to actually believe a benign dx. Its actually the best thing to do. If you have been cleared by doctors and neuros you really dont have to fear any EMG now or later. So on monday pls accept your benign dx instead of being a internet-zombie like so many on this site who has socialized themselves in a world fear. Theyll never get out of here and their souls are lost for good...

 

[AllGoodHere]

No. I never thought I had ALS or MS even when my symptoms were really bad and I was really down about them and have met others here like me. I went to the neurologist and he did the tests and we discussed what it could be, why and why not, and then I accepted his evaluation. Why not? He is the expert dealing with it for 50 years and teaching on the subject. He sent me to other specialists when things didn't clear up after a while but it was really a waste of time and money. I don't go to the dentist and assume that my toothache he has dx'd is really a tumor growing in my jaw. IMO no reason to think yourself into more of an affliction than you already have; life can offer enough rude surprises without searching them out. Maybe it helped me that I have worked with people that did have neurological diseases and have seen them, day to day & week to week, and had some understanding of what they actually were and were not. The struggle for me was accepting there isn't a 'cure' and that bcfs/bfs/pnhe can't be neatly quantified; accepting that there are some things we just can't determine easily, and then, moving on.It's just that it seems to come in surges here at the forum where there are more people that have a lot of fear than do not and these people are also very talkative about it. I came here initially on recommendation in trying to deal with my symptoms - it was good to see that I wasn't such an aberration and that others were struggling with similar crap. I had nobody to discuss it with on a personal level - my doc offered mostly drugs which I didn't want to rely on after I could sleep through the night - it was good to be able to talk about these weird symptoms without getting that 'you crazy' response.

 

[AllGoodHere]

Fasics were never a big deal for me but just part of a host of symptoms - they were the least of my worries in some way as they didn't ever hurt like the cramps, soreness, and spasms. The sensations ranged from curious to weird and were as various as most people here experience over a few years. Some people have very bad fasics so I can see where it could become troubling - mine were not so pronounced. My neuro arrived at a dx in a few days after the first tests - BCFS he said - and that never changed. All of it is pretty much in the past though; after 6 years I have far fewer symptoms and when I do it is not such a big deal as they are not so strange anymore. Sometimes I will get a swarm of them but it passes; I now know how to cope. It is a very individual syndrome - we find common ground but each responds differently.

 

[TwitchyGambler]

I did! I have been twitching off and on for almost 2 years and have had every neuro malfunction a person can have with BFS. Yes my tongue twitched too!