Calf Twitches: Bulbar vs. ***

Hi all,Can I ask you guys a question?If you got twitches in your calves 24/7, arms.. and it would be *** - related than it would start there not? Is it possible than that it would start with bulbar? I'm fixated on my tongue and mouth right now, tongue moves a lot, weird feelings?Could it?Kind regards,Bart

I assume you are talking about ALS?Have you noticed any weakness? when I say that I mean real muscle weakness and not just general fatigue due to your mind working overtime worrying. Contrary to popular belief I've always understood that twitching isn't an initial symptom of ALS, the twitching is caused from atrophy therefore muscle weakness would be onset before any muscle twitching.

Yes talking about ALsI got 24/7 twitches in calves and random for 7 months now, but I aks myself if you could have twitches in calves and random but no weakness in them but them start of bulbar ALS? My tongue has being weird last days, twitches, vibrates, moves, even kind of crampingProblem is: I got a EMG in the first 6 weeks of twitching (started 20 Oct - EMG 6 DEC 07), but they only did it in my legs, arms and hands not in my tongue or neck so maybe they missed it???

This doesn't sound like ALS at all to me. A lot of scenarios could be the cause of your twitching but its very unlikely to be ALS. However without knowing your background it would be impossible to give you a constructive opinion....go see a doctor about your "tongue twitching" and see what he/she thinks.

I went to my doctor this morning but they don't know a thing about ALS, she was just like, ok maybe you got fasciculations in your tongue too, that's it.Do you think it could be als?my story:Twitching started 20 oct 07 (first calves 24/7 and little random)22 Oct : 1st EMG: clean + clinical: clean + bloodtest all normal29 Oct: 2nd EMG: clean8 nov: 3rd EMG: clean14th nov: clinical at univeristy hostpital28 nov: MRI spine: clean5 dec: clincial at university hospital: clean6 dec: 4th EMG: clean (university hospital - specialized in MND)11th dec: MRI brain: clean6th Feb: clinical: cleanbut still twitching in calves 24/7 + randomnow I'm fixated on my tongue, no weakness with speaking, swallowing as I can tell, just being weirdStill scared after 7 months, what do you think?

Ugghhh Bart, Your post make me soooo anxious to see you've had all these tests and your not believing. I cant speak so much I am going for another clinical today...HOWEVER, I did find this post for you. Hope it helps... : One MORE ..Also Read Answere #2 from Neuro: Lovely

I think I'd have stopped worrying after December 6th

Sorry Deedee, I'm just a freak I don't know why I can't believe it. I know you all are fine, I truly do, but when it comes to me, I just think I have to die a horrible way. I can't conivince myself I'm fine. I just keep believing I'm a 1/100000000000000 case you know. I don't want to make anyone upset.Wednesday 4th of June a go back to the university hospital to a professor researching ALS for a clinical and if he says I'm ok (he did it before) I will trust him and stop this: I promise. But know I'm thinking he is going to say..hmmm *beep*...sorry there is something ; you know Pffff

Hey Bart I am freak too. I just want to wake up ONE DAY and not have something horrible lurking in my mind. Its been almost 5 months..I dont know what it feels like to wake up w/out that though tof impending DOOM over your head. Wow youre going BACK to the TOP NOTCH DOC. Bart you have to except his dx. Esp after the June 4 appt lol ASK A LOT OF QUESTIONS, by God TAKE A NOTE PAD , Write them ALL down. Then come back and share them with us lol.. I am going to try and except the treatment I get to do. If I pass the strength test I have to MOVE ON. I CANNNNNOT sit here and con't to dwell on the bad things day after day after day..and cry and cry and cry. It is sooooo not healthy. Bart you are fine!!!! but do what you have to do to get over this ok. I am a firm believer in that. Take Care.Lovely

Great idea, I second you taking a notepad and getting some answers for us!

Hey BartLet me post this again and commentTwitching started 20 oct 07 (first calves 24/7 and little random)22 Oct : 1st EMG: clean + clinical: clean + bloodtest all normal29 Oct: 2nd EMG: clean8 nov: 3rd EMG: clean14th nov: clinical at univeristy hostpital28 nov: MRI spine: clean5 dec: clincial at university hospital: clean6 dec: 4th EMG: clean (university hospital - specialized in MND)11th dec: MRI brain: clean6th Feb: clinical: cleanbut still twitching in calves 24/7 + randomnow I'm fixated on my tongue, no weakness with speaking, swallowing as I can tell, just being weirdStill scared after 7 months, what do you think?WOWOWOWOWOWOWOW! I thought I had had a lot of testing. I am at 4 EMG's and about 15 clinicals with no other testing. Bart both my neuros (one of which is the head of the EMG lab here in columbus ohio and teaches at Ohio State said "Sean after the first month of twitching, regardless of where it was we would see fibs and PSW's in other limbs". BINGO! The key is that they CANNOT miss fibs and PSW's! By the time you have noticible twitching in one limb (the onset of ALS) the other limbs will show changes that I mentioned and ALS will be suspected. I was VERY concerned for months as you are if they "missed something" but I was told if I had twitched and had an EMG and it was negative it is NOT possible for that twitching to be caused by ALS because there were NO changes in the muscle. Hang in there buddy! I know its hard to bleieve that this is all benign and its HORRIBLE. I mowed my grass tonight and it felt like I ran 4 miles. But twitching, cramping and all this is just BFS. Both neuros told me the EXACT same thing....they diagnose ALS and said they have NEVER had a patent present with twitching...EVER!. They said by the time you come to the neuro with symptoms its picked up on clinical exam and the EMG shows changes...then on and on and hopefully its something else. But Bart you have to get it in your mind that you saw the people that spend their LIVES being a NEURO. They dont overlook things and they did WAY MORE TESTS than I thought on you. My last neuro said "Sean you dont need ANY MORE TESTS" You had an EMG and your clinical was negative. This is BFS and its going to stay BFS. She even put it in the doctors notes I picked up afterwards. So I am rooting for you bart, but you have to start thinking positive...the doctors said you are FINE! Trust them. They spent all that time in school, and see patients that HAVE ALS...dont you think they would know if you had ANY sypmtoms? This whole BFS struggle is 80% with our minds and 20% with our symptoms. But as you work on it, its 80% symptoms and 20% your mind worrying you. Hopefully soon you get to that point. But I promise you if the neuros saw ANYTHING you would know it for sure...and it just does not "become ALS"...its BFS and it stays that way. Sean B.

Hey Bart, let me put this simply - you don't have als so you should get on with your life. With the amount of testing you've had you can be assured you are fine.