Anyone present with ALS this way?

[scaredals]

Because my husband is being tested for sleep apnea. He doesn't snore, like Marjorie pointed out with the obstructive kind. Its more like the central kind (there is only this type and obstructive). If it turns out its sleep apnea than it has to be the central kind cause he doesn't snore or gasp for air. Everything I read said this kind is associated with the neurodegenerative disease ALS, its a problem in the CNS. I did see in a previous post on this forum from Marjorie that I believe her husband started this disease with the apnea, hence my worry. I don't want it to be this. I have just freaked myself out so bad that my dr said I just can't think logically right now and the xanax will help with that.

 

[trfogey]

Because my husband is being tested for sleep apnea. He doesn't snore, like Marjorie pointed out with the obstructive kind. Its more like the central kind (there is only this type and obstructive). If it turns out its sleep apnea than it has to be the central kind cause he doesn't snore or gasp for air.

Quoting from your original post in this thread:

He used to in the past make funny sounds breathing while sleeping (sometimes like gasping for air, other times mild snoring, other times like a little "pop" sound after exhaling). Recently, I haven't heard these sounds but I also put a humidifier in our room in hopes of helping to stop them.

What do you suppose might have been causing those symptoms in the past? Sounds like airway occlusion to me. And there is a chance that your husband's recent weight loss could have eased the severity of the occlusion to the point that you don't hear those sounds any more, yet the occlusion could still be occurring. That's what the sleep study is designed to determine.

Everything I read said this kind is associated with the neurodegenerative disease ALS, its a problem in the CNS.

CSA is also associated with heart disease, stroke, Parkinson's, and multiple sclerosis, yet you aren't freaked out about the possibility of your husband having one of those more common disorders. What makes ALS so much more probable in your husband's case than any of those disorders? I have a theory, but I'd be interested in hearing what you really think.

I did see in a previous post on this forum from Marjorie that I believe her husband started this disease with the apnea, hence my worry. I don't want it to be this. I have just freaked myself out so bad that my dr said I just can't think logically right now and the xanax will help with that.

Digging blindly in the archives here has done the same thing to a lot of people. You're just the most recent example. A very good reason to avoid digging on any Internet site until you have a definitive diagnosis from a real doctor.

Just curious -- what does your doctor think of your theory concerning your husband's health? How about your husband's neurologist?

 

[scaredals]

Quoting from your original post in this thread:



What do you suppose might have been causing those symptoms in the past? Sounds like airway occlusion to me. And there is a chance that your husband's recent weight loss could have eased the severity of the occlusion to the point that you don't hear those sounds any more, yet the occlusion could still be occurring. That's what the sleep study is designed to determine.



CSA is also associated with heart disease, stroke, Parkinson's, and multiple sclerosis, yet you aren't freaked out about the possibility of your husband having one of those more common disorders. What makes ALS so much more probable in your husband's case than any of those disorders? I have a theory, but I'd be interested in hearing what you really think.



Digging blindly in the archives here has done the same thing to a lot of people. You're just the most recent example. A very good reason to avoid digging on any Internet site until you have a definitive diagnosis from a real doctor.

Just curious -- what does your doctor think of your theory concerning your husband's health? How about your husband's neurologist?

My husband isn't overweight at all and the noises stopped before he lost weight. He lost 10 pounds in a month, I'm hoping because of anxiety and basically stopped eatin during the day. As for why I'm not worrying about other causes. Its not a stroke or MS, ct scan and mri's ruled this out, dr says no signs for Parkinsons. Mr dr thinks he doesn't have a breathing problem and that his breathing just gets very shallow and I think he's not breathing (yet this is bad too) and the neuro said it could be apnea and is sending him for a sleep study. He's not saying what it could mean. He just said my husband is young and if it is als the emg will say it (he's onlt doing his legs right now though). He just thinks he's too young for als but can't give me another reason for CSA if its that.

 

[trfogey]

My husband isn't overweight at all and the noises stopped before he lost weight. He lost 10 pounds in a month, I'm hoping because of anxiety and basically stopped eatin during the day. As for why I'm not worrying about other causes. Its not a stroke or MS, ct scan and mri's ruled this out, dr says no signs for Parkinsons. Mr dr thinks he doesn't have a breathing problem and that his breathing just gets very shallow and I think he's not breathing (yet this is bad too) and the neuro said it could be apnea and is sending him for a sleep study. He's not saying what it could mean. He just said my husband is young and if it is als the emg will say it (he's onlt doing his legs right now though). He just thinks he's too young for als but can't give me another reason for CSA if its that.

Did any of the doctors indicate that there was a possibility of ALS? What symptoms do they say point to ALS? How did the possibility of ALS enter the picture for you and your husband?

Not trying to be nosy or combative with you, but I hope your doctors didn't bring up that possibility based only on the symptoms you've related in this thread. Given how atypical a case your husband would be, if your doctors were the first ones to bring up ALS, they were extremely unkind to you to have done so. As Wright said earlier in the thread, your husband's story just doesn't sound like ALS.

If your doctors were the first to bring up ALS, I'm very sorry that they did it to you. Unfortunately, it wouldn't be the first time we've heard about insensitive doctors here on the board.

 

[scaredals]

The doctor said he can't rule out ALS until the EMG's are done. He said that sometimes they don't have answers for things (like neuropathy if it's that) but they rule out the big things first...they ruled out MS, stroke, diabetes, vitamin deficiency, Parkinson's, alzheimers, seizures. My husband had his sleep study last night so now we wait for the results. Unofficially, the technician said (the lab specialist is the one that really interprets the results) said there was no periods of apnea or he would've had to stop and put a mask on him. He said during REM he had breathing changes but that that does happen normally in this stage....he didn't say if his breathing changes were the normal kind or not for the REM sleep. My thing is, when his breathing goes through changes (this is when I think he's not breathing but now I guess it must be the changes of REM) he will jerk a leg or shake (sometimes mildly other times his entire upper body or just an arm or just a hand shake really bad)....and he has nightmares that just really started about 2 months ago (they got really bad with the Lyrica but he had some before the Lyrica and also had one hallucination while sleeping too and one time of sleep paralysis). It led me to believe, since I see changes in his breathing pattern (I thought stopped breathing but I guess it's just really shallow since the lab tech said no apnea episodes but breathing changes) that he was either not getting enough oxygen or too much carbon dioxide causing him to jerk a foot or shake (sometimes mild, sometimes bad) at that moment. And I know ALS (if it's the respiratory onset) starts at night according to the Internet readings and I know it says it causes hypoventilation/buildup of carbon dioxide, which causes respiratory acidosis/hypercapnia...his tremors and twitches!