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Neurology (Expert Forum)
twitching for 1 year now,am i clear?
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twitching for 1 year now,am i clear?
by concrete, Mar 03, 2003 12:00AM
you may remember me, i have posted 2 times before. i started twitching all over about 11 months ago after a long bout with health related anxiety. then my back went out real bad for weeks i could not walk w/out a cain. you where great and reassuring but now almost one year later i find myself still obsessed with the fear of als. i went to the nerve and muscle center of texas and saw dr. shabini 2 months into the twitches he did my exam all normal and did a needle emg for me so i would calm down it was normal except a few fasciculations...went back 2 times over the past 6 months for follow up(not by his request)all normal
i am very strong have worked out like mad for the past year to prove to myself i am strong.
i can bench press 300lbs, leg press over 5oolbs, can run 4 miles
and never feel weak...but the fasciculations in my calves are nonstop..milder than at the start but still nonstop,other spots come and go not for more than 3 or 4 days in duration.
now after a year i find myself back where i started..scared out of my mind .
CAN I PUT THE FEAR OF ALS BEHIND ME NOW?
HOW LONG MAY THE BENIGN TWITCHES LAST?WHY ARE THE CALVES 24/7 I READ LOTS OF OTHERS WITH BFS HAVE CALVES 24/7 FOR YEARS?
I READ IN YOUR OLD POSTS DRS TELLING OTHERS FASCICULATIONS WITHOUT WEAKNESS ARE ALWAYS NOT ALS,DO YOU AGREE?
I READ WITH A NORMAL EXAM AND NORMAL EMG YOU DO NOT HAVE ALS?
PLEASE HELP ME , AFTER A YEAR CAN I PUT THIS FEAR BEHIND ME AND GO ON WITH MY LIFE?,MY FAMILY NEEDS ME TO BUT I JUST HAVE NOT BEEN ABLE TO RID MYSELF OF THE FEAR.
THANK YOU AND GOD BLESS YOU .
i am very strong have worked out like mad for the past year to prove to myself i am strong.
i can bench press 300lbs, leg press over 5oolbs, can run 4 miles
and never feel weak...but the fasciculations in my calves are nonstop..milder than at the start but still nonstop,other spots come and go not for more than 3 or 4 days in duration.
now after a year i find myself back where i started..scared out of my mind .
CAN I PUT THE FEAR OF ALS BEHIND ME NOW?
HOW LONG MAY THE BENIGN TWITCHES LAST?WHY ARE THE CALVES 24/7 I READ LOTS OF OTHERS WITH BFS HAVE CALVES 24/7 FOR YEARS?
I READ IN YOUR OLD POSTS DRS TELLING OTHERS FASCICULATIONS WITHOUT WEAKNESS ARE ALWAYS NOT ALS,DO YOU AGREE?
I READ WITH A NORMAL EXAM AND NORMAL EMG YOU DO NOT HAVE ALS?
PLEASE HELP ME , AFTER A YEAR CAN I PUT THIS FEAR BEHIND ME AND GO ON WITH MY LIFE?,MY FAMILY NEEDS ME TO BUT I JUST HAVE NOT BEEN ABLE TO RID MYSELF OF THE FEAR.
THANK YOU AND GOD BLESS YOU .
Doctor's Answer
by CCF-Neuro-M.D.-JT, Mar 03, 2003 12:00AM
Please keep in mind that I have never personally seen you nor reviewed your records, but I do remember our prior communications.
1.Yes.. The fact that it's been a year and there has been no change in your symptoms or exam makes the possibility of ALS very very very unlikely. But again, nothing in medicine or life for that matter is 100%.
2.Many years. Not sure, but I also have seen patients who have had the same type of symptoms for quite a long time.
3.Don't like to use the words always or never, although a few textbooks do say that's true. There are a handful of reports that describe patients who first present with twitching alone for a FEW months followed by other clinical signs of ALS.
4.There is no blood test or anything that will easily or automatically confirm the diagnosis of ALS. It's a clinical one based on your history, exam and EMG. If everything is normal, then it's unlikely that you have ALS.
You have had multiple examinations by many specialists, all of which have come back normal. At a year, you now still have just fasciculations with no weakness or muscle wasting. I understand how ALS can be concerning as it's a progressively disabling and fatal disease and you have one symptom that is part of the clinical features. But that's just it. It's only one feature that happens to occur in other disease states as well as normal people all the time. I think that it's time to put this behind you, for your sake and your family's. I wish I could say that you won't ever get ALS or cancer or a disabling stroke or some other horrible disease. But I can't-no one can. What I can say is that it doesn't sound like you have ALS now. And that's all we can do, just live our life now. If it's been too difficult to cope with your symptoms, consider getting some counseling. I'm glad that you have done well clinically over the last year. Best of luck to you.
1.Yes.. The fact that it's been a year and there has been no change in your symptoms or exam makes the possibility of ALS very very very unlikely. But again, nothing in medicine or life for that matter is 100%.
2.Many years. Not sure, but I also have seen patients who have had the same type of symptoms for quite a long time.
3.Don't like to use the words always or never, although a few textbooks do say that's true. There are a handful of reports that describe patients who first present with twitching alone for a FEW months followed by other clinical signs of ALS.
4.There is no blood test or anything that will easily or automatically confirm the diagnosis of ALS. It's a clinical one based on your history, exam and EMG. If everything is normal, then it's unlikely that you have ALS.
You have had multiple examinations by many specialists, all of which have come back normal. At a year, you now still have just fasciculations with no weakness or muscle wasting. I understand how ALS can be concerning as it's a progressively disabling and fatal disease and you have one symptom that is part of the clinical features. But that's just it. It's only one feature that happens to occur in other disease states as well as normal people all the time. I think that it's time to put this behind you, for your sake and your family's. I wish I could say that you won't ever get ALS or cancer or a disabling stroke or some other horrible disease. But I can't-no one can. What I can say is that it doesn't sound like you have ALS now. And that's all we can do, just live our life now. If it's been too difficult to cope with your symptoms, consider getting some counseling. I'm glad that you have done well clinically over the last year. Best of luck to you.
i also saw dr.bob grossman at baylor at methodist , he is head of neurosurgery and chief of staff, he knows a lot about muscle type diseases also. saw dr howard deerman at baylor also all said bfs..
Yesterday while in dentist chair the back of my head became sore. I thought it was the headrest and told dentist it was uncomfortable, he said the other patients said it was very comfortable.
Anyway, last night laying on it, it hurt, today I still have the soreness. When I went for a nap the right side of my body ached and the left side had chills. Dentist said the novacaine wouldn't do this. Have any of you experienced anything like this?
I do have a lesion (poss stroke or MS) and epilepsy from it and abnormal exam, blah blah blah.
P.S. You find that cap-lock button yet, Concrete?
See ya around......