Could someone answer a question for me? How many of you cannot sleep because of breathing problems? Is that what all of you are talking about? Does ALS only affect your sleep if you have bulbar type symptoms? I have similar problems with fatigue.
I have not been diagnosed with ALS, but I have missed the last three days of work b/c of fatigue. I met with my neurologist on 8/8 and he told me he thinks my fatigue is related to anxiety issues. He thinks the twitching and cramps in my left calf are benig, even though I am apparently losing muscle strength. He thinks these are two totally unrelated events. I had an EMG (negative) in June, along with an MRI of my spine. The neurologist did not see anything remarkable about the MRI. He said it looked like a "normal" spine of a 52 year old which apparently includes some minor bulging discs. He prescribed Xanax to treat me for anxiety. I took it yesterday as my fatigue became apparent. It seemed to not have any affect on the fatigue as I once again felt so incredibly worn out that I had to take a nap for 2.5 hours. I NEVER took naps until about two months ago. I am a runner but I don't know when the last was that I felt up to running. My wife and parents are frustrated that I have not gotten a second opinion yet. (There is a Mayo Clinic here). I am wondering if I should go.
Hi Andy, there are reasons to not sleep well, wake tired, etc that would not specifically be bulbar related. I'm guessing that as a 52 yr old male you snore some? (just a wild stab LOL) You may be experiencing sleep apnea. If there are times throughout your sleep cycle where you're not taking in enough oxygen, you're going to be tired in the day, maybe have headaches. It puts one at risk for serious blood pressure problems too. It will also make one wake after falling asleep, even though at the time of waking, the person wouldn't necessarily realize it was due to not breathing well enough. There are two types of sleep apnea, obstructive, which is a physical cause, whether it be just normal aging, or weakness due to a disease or illness. There is also a type that is central nervous system caused, in that somehow the signal gets mixed up and the body just "forgets" to breathe. With this type, a person may not snore at all, because its not from an obstructive cause, the person would just not breathe enough. If you've not participated in a sleep study, then that is something I'd highly recommend. The doctors can learn a lot about what is going on with just a couple of hours of sleep during one. Any of your doctors could give you a referral to a place where these are performed.
As for another take on bulbar symptoms causing it, I do have bulbar onset of MND, and have had fatigue for a long time. Sometimes I wake and get stuck awake, sometimes not. But, even though my ability to breathe is affected during sleep, I've read that upper motor neuron involvement will cause fatigue, it doesn't even have to be because of not getting a proper rest. So, a person can be tired without being sleepy, (which describes me best) but it sounds like you're having a lack of oxygen, which made me wonder about the sleep apnea.
Definitely pursue it, especially if the medication prescribed is not effective. Good luck!
