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Sd9765

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Learn about ALS
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Pa
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Pittsburgh
Sorry to bother those of you afflicted with this awful disease and those who care for someone who has it, but I can't seem to shut this illness out of my mind.

About two months ago I exhibited sudden onset of limb weakness, muscle twitching, muscle ache, and a burning sensation all over. Since then, not too much has changed. Muscle twitching is wide spread. I have had slight swallowing and breathing issues, but it is possibly related to anxiety. So far, I've had a clean MRI, clean bloodwork, one clean emg, and a second emg showing decreased cmap after fatiguing my muscle for 1 minute.

My neurologist suspects myasthenia gravis. I could use some reassurance that als is out of the question at this point. The twitching really makes me uncomfortable.
 
My neurologist suspects myasthenia gravis. I could use some reassurance that als is out of the question at this point.

There it is - you are seeing experts, work with them until they have a definitive answer. That's my advice to reassure you. All the best in working out the issues that sound nothing like ALS.
 
Muscle ache and a burning sensation point AWAY from ALS.
Twitching all over is not the way twitching occurs in ALS.
Clean EMG rules out ALS.

You're doing all the right things by following up with your doctors.
You don't have ALS.
 
Thanks for the responses. I always worry about hearing stories of people's ALS that started with twitching, but I'm assuming that diffuse intermittent twitching was probably not what they had. Additionally, I assume an EMG would have picked up any issues with these people well before they noticed, correct? The needle portion of my EMG was relatively short, but included all four limbs. Would signs of ALS be found relatively easily? None of the needles were left in long enough to even pick up any of the twitches I currently have.

Myasthenia Gravis isn't great, but it sure beats the other possibilities. I go back to have my face tested next week. Additionally, I am trying to find a counselor or therapist specializing in health anxiety. I've never had this issue before, but once the connection between twitching and ALS is in your head, it never leaves.
 
If you were to follow all the through the threads of those coming here complaining about twitching you'll find that 99.9 percent of them in fact do not have ALS. Their problem is anxiety, period.
 
If you were to follow all the through the threads of those coming here complaining about twitching you'll find that 99.9 percent of them in fact do not have ALS. Their problem is anxiety, period.

Agreed. It is the .1% I'm worried about. On Monday I have an appointment for therapy with someone trained in cognitive behavioral therapy. I've never had health anxiety before, but I know some of my thoughts are currently irrational. However, unlike some others, I have experienced some weakness. I am continuing down the myasthenia gravis route.
 
Honey you have to stop now and work with your doctors.

We can't babysit and provide ongoing reassurance to people who have no ALS symptoms, we are too busy with the important task of caring for those who do have the disease.

Get help please, I sincerely wish you all the best, but please stop coming here, and especially stop trying to add to your list of non ALS symptoms as though it will convince us.
 
Honey you have to stop now and work with your doctors.

We can't babysit and provide ongoing reassurance to people who have no ALS symptoms, we are too busy with the important task of caring for those who do have the disease.

Get help please, I sincerely wish you all the best, but please stop coming here, and especially stop trying to add to your list of non ALS symptoms as though it will convince us.

Tillie

Tillie,

My sincerest apologies, and yes, it is selfish to seek reassurance from those actually afflicted with als. From my first post, I said my initial symptom was weakness. It started in both legs. I was actually diagnosed with guillain barre by a neurologist, but a clean ncs ruled it out. I have told myself over and over that having all four limbs go weak in a weeks time does not fit als. Reading on here and other places where people have had body wide twitching which eventually results in als worries me. Additionaly, I read a study where decreased cmap was found in als patients as well. I understand that in these scenarios, emg results likely showed als from the beginning, but I can't seem to assuage my fears. Hopefully my next neuro appointment for facial testing for mg as well as therapy will help me let go of this fear.
 
Muscle ache and a burning sensation point AWAY from ALS.
Twitching all over is not the way twitching occurs in ALS.
Clean EMG rules out ALS.

You're doing all the right things by following up with your doctors.
You don't have ALS.

Atsugi,

I have seen you help many on this forum and I appreciate the feedback. Uou seem very knowledgable on als. In your experience, is a needle emg that only took five minutes enough to exclude als? I'm a little unsure of exactly what they look for on emg to determine als, but I know that none of the needles were in a muscle for more than 30 seconds, although on some I was asked to flex.
 
SD: yes, I thought about that, too, and decided that the doctor knows what he's doing. If it's clean, it's clean.

They don't "look for ALS" on the EMG. Rather, they get to see the overall state of that portion of the nervous system.
 
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