billyd
Active member
- Joined
- Oct 11, 2007
- Messages
- 47
- Reason
- Learn about ALS
- Country
- US
- State
- New Jersey
- City
- Dennisville
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 respiratory onset als at the emg. I need meds to get 2 or 3 hours of sleep then I wake up feeling out of breath. Once awake its ok. This has been going on every night since my hospitalization. He told me that no one with an fev of 127 has a problem with their diaphragm. I am not convinced but he says he has patients with respiratory onset als and I am not one of them. He ordered a sleep study he said to allay my fears. Now I feel like this is starting all over again and I am back under the dark cloak. I don't think there are much worse feelings then lying awake not being able to get to sleep and after you do wake up sob. Sorry to ramble but scared all over again.