Living with Muscle Twitching Fear

[Frumpy]

Hi All,For the past 4 months i have been reading all of your stories and clinging to your advise.I have been very scared to post because i dont want to be the exception to the rule and be the one who winds up having the *** diagnosis. Here is my story short. I woke up one day with a weird muscle twitch in my left buttocks. I played it off as nothing since I slept on the couch that night and just thought I slept wrong. The next few days I started to notice my hands , and arms jerking especially as I was going in and out of sleep. This led me to Google my symptoms and the find the dreaded ***. I wasn’t too scared yet as I didn’t have the fasc or any weakness. I was light headed and not feeling well but I thought it may have been to the half marathon I was training to run. My anxiety levels did start to rise but it wasn’t until two days later, when I noticed a tremor starting in right ring finger I lost all control. I immediately left work, and went into an emotionally and physical tailspin like no other. Shortly have this i notices the facs all over my body. Fast forward 19 weeks and i have seen my primary MD, neuro, and the best man in my weeding who works at the Mayo Clinic as a MD of internal medicine. All of the clinical tests and EMG came back normal. In discussing this with my Neuro and my friend neither of them really believe in "BFS." Meaning they will say there are twitches that are benign but BFS is just a general term and not really a med conditions. So they just kind of say we don't know what it is.....Currently, my fasc have only gotten worse. My calves twitch almost all the time, however i also feel small twitches in my hands/face/ arms and back. My question is this. 1)The fasc in my calves are very light at times. Meaning i can only see them but not feel them (about 70% of the time) is that a concern? 2) Driving makes my right calf go nuts. Any one else have this? 3) How do i know if i am weak in my foot? Is pain weakness? I appreciate any advise Thanks MJC

 

[simonw00]

Hi MJCWelcome to the site. Your symptoms sound very similar to so many other people on this site and so you can be reassured that your condition is indeed benign. As to whether you call it BFS or not isn't really important in my opinion. In New Zealand, where I live, my neurologist simply refers to my condition as 'benign fasciculation' rather than BFS. I personally do believe that BFS is a real diagnosis - I had literally never had one episode of fasciculation in my life (apart from the odd twitchy eyelid) and then, one day out of the blue, when I was 44 years old, I came down with symptoms almost identical to yours, although it struck first in my hands. So in my opinion, such significant symptoms that come on so abruptly must be due to some 'real' disease process. If you look through the vaious posts in the search funcion of this site, you will see all sorts of theories about what causes BFS - anxiety, over-exercise, infections, auto-immune problems... No-one really knows but I suppose it is a combination of some or all of the above for the most of us. Little matter what causes it because, once it strikes, the management of BFS is the same irrespective of the trigger. My humble view of how of manage BFS is (1) manage your anxiety (2) manage your anxiety, and (3) manage your anxiety! Other helpful advice - do not self test for strength, try to rest plenty, take regular light exercise and once again manage your anxiety. There are some people who take medications to reduce the severity of their symptoms and to manage their anxiety - you should talk to your doctors about whether you should consider medications.To answer your specific questions;1. 'Light' fasciculation that you can see but not feel is nothing to worry about. That said, I DID worry when this happened to me (search my old posts) - I went for months with strong fasciculation that I could easily feel. My neurologist said 'Fascicualtion that is strong enough to be felt is benign because it is occurring in a strong muscle that has not been weakened by ALS or any other problem'. And then one day my fasciculation changed and I noticed that I could seldom feel the twitching anymore. I freaked out and thought that 'Fascicualtion that is NOT strong enough to be felt may not be benign' and it took me a while to realise that all that had happened was that I had grown so accustomed to the twitching that I was not noticing it anymore and that this was a good thing and was in fact some progress in terms of recovery. I also realised that the fasciculation was lighter because it was not quite as severe as it used to be and that this was a good thing. I have had BFS for more than 21 months now and my calf fasciculation remains 24/7 but I am oblivious to it for about 90%+ of the time now.2. I also find that I have calf problems with driving. I assume that this is because you have to hold your foot in an awkward position when driving and this puts a demand on your calf muscles.3. Weakness is NOT pain. Don't make the mistake that I did, whereby I thought pain and weakness were linked so I started self testing to make sure there was no weakness and made the pain worse. This led to a vicious cycle and I maintain that one of the reasons that I have ongoing problems with calf pain now is that I damanged my muscles by doing pointless and stupid self testing.Take care of yourself.RegardsSimon

 

[tensionpusher]

hi mjc- the jerks going in and out of sleep sound very much like something I have experienced. I have BFS but the falling asleep jerks sound like hypnic jerks. I had them severely in 2003 for about 9 months. I also had auditory hypnagogic hallucinations. I feel it is all related. Google these terms. I think there is less known about this than BFS itself. Tensiontwitcher

 

[TwitchyGambler]

I went through the same thing with light twitches and hard twitches. The butt twitches killed me. I also had pain in the butt after the twitches. SOO you know what I did before I joined this site. I went to the ALSFORUMS and asked those people if they thought I had *LS and they all wrote back and told me I was on the wrong forum and that I should join this one. SO here I am clean emg and all. My twitches are calm now I guess due to magnesium supplements. I am too scared to stop taking them in fear that I will start the awful spasms. My neighbor and moms best friend had *LS and one started with spasms in his shoulder that was soo severe that you could see with the naked eye. The twitches were nearly non stop or were nonstop to my recollection and he was alarmed at the fierceness. Then 2 weeks later the weakness set in. His weakness left him unable to physically lift things. So his first sign was twitching but the weakness was SHORTLY very SHORTLY LATER. My neighbor noticed his atrophy first. He went into the DR with a cold and said oh yea by the way look at my hand. My dr which was his dr came unglued! He knew right away. Then the Dr. asked him if he could unscrew stuff and he said NO I have been having all kinds of problems. This was in 1993. He lived until 2006 still walking and only lost one arm and hand funtion and the hand in the other. He died of a blood clot after surgery for a hip replacement. I am glad he didn't go the other way. My moms best friends husband died 6 years later. Let me add this my moms best friend never had any other twitching after his shoulder so he didn't have widespread twitches at all only his shoulder twitched the entire time he had the disease and all of his muscles died. He died or the respiratory stress. My neighbor didn't have twitches until maybe 10 years into ALS and his were only after his muscles were weak and he had them only in the arms and hands no where else.