Anxiety over GP Appointment for Twitching

GinniferLynne

Well-known member
Okay. I made an appt. with my GP for the twitching (I mentioned it before, but I want to talk to him about this at length) I can't get in to see a neuro unless I get a referral. I will not be able to see my GP until end of June. Which finally brings me to my question (which I hope someone can answer since I am really anxious until I can get to the doc.) Regarding weakness: Would I, myself, more than likely notice weakness if there was any? I workout daily, walk 3 miles daily, and my muscles are visably getting larger due to weight training. The reason I ask is because on the Cleveland Clinic forum one doctor answered that ALS could present with "slight" weakness. Sorry for the question, but perhaps someone can shed some light. Thanks!
 
What they mean by "slight weakness" is that when you have ALS, the muscles and nerves disconnect at a certain "pace". In other words, the onset has to start somewhere and continue at a given pace. So with that, of course one would present with slight weakness if it was real early into the progression of the disease. It's not like you wake-up one day and can't get out of bed. It does take a little time, but with that, it is also fairly rapid and it NEVER gets better or goes away, which is a certain way of telling perceived weakness to actual clinical weakness.

Also, BFS twitches are different than ALS twitches, and I have gone into detail about that in my "BFS in a Nutshell" posts at the top of each page. A lot of BFS twitches are NOT true fasciculations. They are simply "twitches", which is why a lot of times, people with BFS that twitch DURING their EMG, don't have them show-up on the screen. That's becaue they are not a true "fasciculation", and ALS twitches are TRUE fasiculations.

Most ALS cases on record take a couple of months to show any real signs, so if you have been twitching for a few months and have no definate signs yet, OR you have symptoms that come and go, then that really points away from ALS. If you have a clean EMG under your belt, then you really have nothing to worry about.

Remember, in ALS the twitches are CAUSED by disconnecting nerves and dying muscles, so that would mean you ALREADY have disease doing it's destruction, and REAL weakness will be folling REAL soon. If you don;t have any REAL weakness and your twitches jump around at random, then that all points away from ALS.

Also, keep in mind, ALS "migrates" it doesn't "hop around" from here to there, and then back again. It "usually" starts in an extremity, such as a hand or a foot, and migrates from there, leaving a path of total destruction in it's wake. That's a far cry different than what BFS does. Nothing you described sounds like ALS to me at all, but go see your doc and neuro, just so YOU can have the peace of mind and get back to your normal life again.
 
Alonzo, you ARE a saint :)

Do you ever suffer from (what I think) may be myclonic jerks? Yesterday, while at rest, my arm jerked all by itself (like my arm was laying at my side and someone flipped the forearm and hand area into the air while my elbow and upper arm stayed motionless) I may have been just on the verge of sleep. Has this ever happened to you? Is this a BFS thing, too? Thanks for any/all insight :p
 
Hi GinniferLynne,

Myoclonic jerks are common in BFS. Many on the board have mentioned them in the past. One member, I can't remember her name, had a very funny post in which she described kicking her cat off the bed when her leg jerked. I'm sure the cat was not impressed though!
 

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