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  1. B

    Insight/input/billyd

    As some of you know I have run the gamut of doctors and tests since my illness last summer that began with severe cramps and fasiculations in both calves and feet. Later in the fall I began to occaissionally choke on saliva and have some minor difficulty with swallowing. Severe anxiety and...
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    Methylmalonic acid & Billyd

    I have not posted in a while. I am in the re-check every 3 months turnstile with the neuromuscular doctor. Living with the cramping legs, twithching toes and swallowing issues for now but at least getting some sleep and food. Got a call that my Methylmalonic acid level was and is high so I...
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    Update billyd

    It seems that I have joined the ranks with Cindy, CrystallK and others who have serious symptoms and no concrete diagnosis which I guess is a good thing. I was seen by Dr. McCluskey at Penn clinic in November who felt the fasics and cramps in the legs were cramp fasic syndrone. Because of some...
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    question on bipap/cpap

    Decided to post in quest of info. Result of my sleep study was some obstructive sleep apnea that neuro said was not from diaphragm weakness. I go for swallow study Wednesday due to that issue. I do not snore and am not overweight so am curious about causes of obsa and if anyone has knowledge...
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    Sleep study, update

    Well now have had a sleep study, Not much of a study as the first two hours could not fall asleep so they allowed some zanax which got me four hours. No one rushed in with a oxygen bottle or mask so I guess there was no emergency in that 4 hours. So I have gone from a "you don't have als"...
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    billyd

    Well, as many of you know from my posts I saw Dr. Mccluskey at Penn ALS clinic. All tests were clean including the emgs on 4 limbs. He told me "you do not have ALS" and I felt like I had been given life itself. However, I have the sleep breathing thing going on and told him of my concern about...
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    appointment

    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...
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    Today

    Today I go to the clinic at Penn Univ Hospital. I find little reason for optomism as I feel so ill. I pray for something treatable but with the revelation on why I can't sleep for more than 2 hours with or without drugs, short of breath, I am even more concerned. I had a spirometry test...
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    appointments

    Well this will be a super stressfull week. Tomorrow AM have appointment with pulmonologist, more importantly Wednesday with the ALS clinic at u of penn, and Friday new emg's. I am totally freaked out by the speed at which this has gotten to this point. Tried to work today and that was a joke...
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    Breathing

    I am fairly new to this forum and have posted too often but it helps to have somewhere to go with all this. I hope I am able to be a long poster and have no diagnosed as yet. I have trouble sleeping for any length of time because as soon as I cross into that pre sleep area I suddenly feel like I...
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