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billyd

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I had my appointment with Dr. McCluskey at Penn neurologic als clinic. His response after exam was, you don't have ALS. Went home optomistic but still have same sleep disturbances and swallowing issues. I have emg today. I have breathing issues with sleep, wake about every 2-3 hours feeling like I can't exhale. If I do sleep more than 4 hours I sweat. I know this is not good. He doesn't have any explanation of that for me.
 

Blizna

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I hope your EMG will be fine. Explanation for your problems can be thyroid or lungs troubles. I had the same when I had a lack of jodium.
 

billyd

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I have mild asthma but my FVC is 95% and my FEV is 120%. Dr. says diaphragm can't be weak with those numbers. Thyroid is ok. So no one seems to have an answer but I know my body and whats happening is not good and continue to not have an answer.
 

ltr

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Billy, have you had a sleep study? I am very happy that the doc said you do not have als. Thanks for telling us that.
 

billyd

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The emg was negative on all four limbs and the neuro exam was good. I don't know Dr. McCluskey at Penn except he is an ALS doctor at an als clinic so hopefully he is good because my hopes are riding on his opinions. I do not hope for a bad diagnosis but do not feel well with some scary symptoms that no amount of anti anxiety meds have fixed. Still cant sleep more than three hours at once and wake up feeling short of breath and some swallowing issues so now have to get sleep study, swallowing study etc.
 

Blizna

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Thats excellent, I think you can be sure its BFS what causes your twitching and the rest could be result of anxiety. Look, after 5 months my twitching is a bit better after taking meds but psychiatrists told me it wont fade away in near future - its really large damage to our nerves and it will take a long time. And it could stay.

PS: I have also sleep disturbances, I wake up every day few hours earlier. No breathing problems but its strange...
 

lhagsjr

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I was a patient of Dr. McCluskey as well...

He tells it like it is.
 

billyd

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Dr. McCluskey

Did you change from him to someone else, any problems with diagnosis, testing etc.
 

JAndrew

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Billy, I am so happy for you and your son that you do not have ALS. I hope the docs find what is wrong with you soon so you can put you mind at ease. Merry Christmas.

Jon
 

juliesmile

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Billy,
Been doing lots of looking around for answers to my husbands condition. Found something called Isaacs' Syndrome. or neuromyotonia. Check it out.
 
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