Status
Not open for further replies.

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.
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
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.

I think you will find your answers in the sleep study. Keep the faith pat1
 

ltr

Senior member
Joined
Feb 11, 2007
Messages
690
Country
US
State
NY
City
Elmira
Billy, Have you ever had a cardiac workup with a stress test? I don't mean to alarm you, but some cardiac problems are worse when lying down. Just a thought.
 

billyd

Active member
Joined
Oct 11, 2007
Messages
47
Reason
Learn about ALS
Country
US
State
New Jersey
City
Dennisville
reply

Yes, have had all the cardio stuff. This is just horrible whatever it is , I can not fall asleep just when I start I wake right up. So then take ativan and sleep for 2 or 2 1/2 hours and wake up with a start. Uncomfortable lying down on my back. Told all this to doctor mccloskey at penn and I think he believes it is all anxiety related but ordered a sleep study anyway. How can I do a sleep study if I can't sleep? Plus even if it is apnea you cant tell whether its from diaphragm problems or not only that you dont breathe. I would have felt better if he ordered a sniff flouroscopy to end this worry.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Billy- a lot of my symptoms settle down when my CPAP is adjusted properly. Doesn't mean something is not going on, I just mean I do better on a full night's sleep with enough oxygen in my blood. I can walk farther, hold a cup of coffee, and so on. So Pat may be onto something. Maybe a sleep study will help. Cindy
 

billyd

Active member
Joined
Oct 11, 2007
Messages
47
Reason
Learn about ALS
Country
US
State
New Jersey
City
Dennisville
sleep

I know, I would give anything to be able to fall asleep right now instead of this medicine induced short nap. I hope this has a good outcome but I dion'rt ffeel real confidant right now. I hope the good doctors bold statement in front of my wife turns out to be true!
 

lhagsjr

Distinguished member
Joined
Apr 25, 2007
Messages
173
Country
US
State
PA
City
Philadelphia
Billy

what was the bold statement? Like I said, Dr McCluskey tells it like it is....
 

billyd

Active member
Joined
Oct 11, 2007
Messages
47
Reason
Learn about ALS
Country
US
State
New Jersey
City
Dennisville
reply

He stated, after exam "you don't have als", i told him about the respiratory symptoms that have been going on since summer but have now progressed to chronic insomnia, short sleep cycles, (less than 2 hour) awakenings to sudden feeling of not being able to breathe, he cut me off by stating that no one with an fev of 120% could have diaphragm problems. Then I made the mistake of reading about the people with normal fvc's who had respiratory onset disease which sounds exactly like what I am going through. Some nights I rest prone because I feel like I can't breathe, I can't stay asleep with or without drugs, this is not me.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Billy- if we can get the breathing think solved you will be good to go, so to speak. Feeling SOB is unnerving. Did anybody shcedule a sleep study?
 

billyd

Active member
Joined
Oct 11, 2007
Messages
47
Reason
Learn about ALS
Country
US
State
New Jersey
City
Dennisville
No, I tried on Friday (emg day) and everyone was gone for the day. McCluskey did not think it was urgent. i think his opinion is I am driving myself crazy with all of this and that is true to a certain extent. But if anxiety was keeping me up the meds would allow me to sleep. I have not had a decent nights sleep of any kind since mid october. He also referred me to a swallow study for that issue. I may go to a local hosp that has a 24/7 sleep center because I literally can not stand this anymore. I am sorry to feel this way when I don't even have a diagnosed but I have never felt so ill without reason.
 

ltr

Senior member
Joined
Feb 11, 2007
Messages
690
Country
US
State
NY
City
Elmira
Have you seen a pulmonologist? Sorry to keep asking you questions, but just trying to help you figure this out. In the beginning of my illness I had the same problems and now I have it occasionally. Anxiety meds didn't help me either....because it wasn't anxiety! Sometimes I have shortness of breath during the day too. So, I know how bad it makes you feel. The thing is you may have any number of things going on and it may not have anything to do with neurology. Do you have weakness, twitching, cramping or any other symptoms along with this?
 

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
City
philadelphia
Billy ,

Is it just when you sleep you wake up SOB. Are you expeirencing Sob any other time?
 

Clbrink

Active member
Joined
Oct 26, 2007
Messages
44
Reason
CALS
Diagnosis
11/2003
Country
CA
State
Ontario
City
Burlington
Don't call Billy an SOB! ... hmmm, and I have experienced a few SOBs...

sorry, not trying to make light of the situation, had to do it, couldn't help it, the devil made me do it...:evil:
 

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
City
philadelphia
Clbrink,

I think we all experienced a few SOBs.... Yes you had to do it , I can't believe I didn't in realize the intials.
Maybe, i'll may him laugh alittle. As we all know laughter goes a long way.
 

billyd

Active member
Joined
Oct 11, 2007
Messages
47
Reason
Learn about ALS
Country
US
State
New Jersey
City
Dennisville
At wits end

Saw a pulmonologist, went to hospital did all the spirometry, Everything was above predicted except the fef which is expiration between 25 and 75 %, mine was 75 which is consistant with asthma people. I now feel sob in the day and at night I sleep for two hours wake up hyperventilating and so on from xanax to xanax. At the clinic they did a baseline fev and mine was 127% again all these tests were sitting not lying down. My family is convinced that I am doing this to myself including the doctor but i get litle relief from the meds. My heart rate is ridiculous most of the time also. Trying to get into a sleep study somewhere but I think by the time I get there I will have had a heart attack.
 
Status
Not open for further replies.
Top