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Q: Strange Symptoms
asked by: sandyshuby on January 21st, 2005
New User
About two years ago, I started with a voice tightness. At that time I was hypothyroid. Then came a real bad back and then a "shaky" feeling like a tremor. Then came the muscle twitching. I would see my muscles roll in my stomach or in my face. I would get abnormal movements in my shoulders, fingers, feet, etc. I would also get spasms in my throat and esophagus. I have yet to find a doctor to give me an answer. I went to mayo clinic and they told me spasmodic dysphonia and anxiety. I have been on other websites and a few people have said that mayo had told them anxiety when they had a diagnosis of als. I believe I have bulbar als or some form of mitochondrial myopathy. I believe something more is going on than anxiety. I used to be able to eat any kind of food. Now I cannot eat any kind of food with msg. I read that people who have neuromuscular diseases are affected with msg. Also cannot tolerate gluten food any more. Don't know if this has something to do with the glutuate transmitters and excitocity in the brain. I have done so much research but cannot get a doctor to listen to me. They all don't care. I'm so frustrated. :( :(
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rIcHrD
replied on January 28th, 2005
New User
Go to your doctors and explain all those symptoms (if they're still there). Then say what your concerns are: als/mitochondrial disease. Tell them you'd be relieved if they performed tests to find out what was wrong, or maybe at least just to exclude the possibilities that worry you.
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sandyshuby
replied on January 28th, 2005
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Doctors, Doctors, Doctors
:cry: i've been to so many doctors and neurologists, it's not funny and yes, i've explained all of that to them. So what next?
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rIcHrD
replied on January 28th, 2005
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I can't believe they still haven't done anything.

A competent doctor would have you checked out thoroughly: mri, eeg, emg, blood test for immune responses and general checkup (glucose levels, thyroid hormone, cholesterol), basic neurological examination, etc. The idea will be to have all your symptoms looked at, especially the ones that couldn't possibly be psychogenic (e.G. Gluten allergy).

A less than competent doctor would send you to a psychiatric hospital and tell you it's all in your head, without performing extensive tests first to verify the lack of neuropathy, myopathy or immunopathy (i'm not inferring you're psychiatrically ill, just the possible consequences of ignorance or prejudice on the part of a doctor).

An incompetent doctor would do nothing.

If you have an incompetent doctor, change him/her. Tell your doctor you would like something done - that you are not satisfied with nothing being done. Remember it's your life and you have to take charge when noone else seems to be doing so for you (your doctor perhaps), because if the worst happens, it will be you that suffers. Give them hell if you have to and get yourself examined and given a reasonable diagnosis. Understanding the problem is fundamental to coping.
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Hypochondriac1028
replied on March 23rd, 2005
Experienced User
Suks
Id kill myself if I had it
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btavern6
replied on June 26th, 2006
New User
Re: Strange Symptoms
Hi my name is barb I went to the mayo cllinic and was told that I have als they basted it on my voice.They say that there are the best in the u.S. My a--it has been 7 months and my voice is getting better. When I was told I have als is was told to go home and die. Find a doctor that will listen to you if there is one out there. Good luck
sandyshuby wrote:
about two years ago, I started with a voice tightness. At that time I was hypothyroid. Then came a real bad back and then a "shaky" feeling like a tremor. Then came the muscle twitching. I would see my muscles roll in my stomach or in my face. I would get abnormal movements in my shoulders, fingers, feet, etc. I would also get spasms in my throat and esophagus. I have yet to find a doctor to give me an answer. I went to mayo clinic and they told me spasmodic dysphonia and anxiety. I have been on other websites and a few people have said that mayo had told them anxiety when they had a diagnosis of als. I believe I have bulbar als or some form of mitochondrial myopathy. I believe something more is going on than anxiety. I used to be able to eat any kind of food. Now I cannot eat any kind of food with msg. I read that people who have neuromuscular diseases are affected with msg. Also cannot tolerate gluten food any more. Don't know if this has something to do with the glutuate transmitters and excitocity in the brain. I have done so much research but cannot get a doctor to listen to me. They all don't care. I'm so frustrated. :( :(
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dinowk
replied on October 28th, 2007
New User
Listen to the Doctors
Sandy,

from what your description, you do not have ALS. If you have visited a lot of doctors and have done a lot tests, trust the doctors and test results. Have you seen movement disorder specilist?

In some degree, you do have anxiety or panic disorder.

Work with your doctors, not against the doctors.

Good luck
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