Does this sound like ALS? Frantic

[heatherjoy]

Re: low air saturation in sleep study

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Hi, me again, a little over a year later. I finally got my bp under control (a fantastic cardio guy), but my oxygen saturation level stays in the low 90's (acutally I think it's been this way for at least 5 or 6 years.) Awful lung doctor diagonosed sleep apnea, then copd then pulmonary hypertension, after all the tests it was none of these. My cardio doctor did a right cath and I have dystolic dysfunction which the pulmonary doctor said is "moderate" and is causing the low oxygen sats. The cardio disagrees, as he says it's mild. My primary care doctor is scheduling another sleep test and lung functions at another place, probably in a week or two. I'm still concerned it might be ALS since there's no definite diagnosis, (I've read it can start in your lungs). I'm frantic right now! I don't have any weakness that I know of, however, my hands have been falling asleep at night, (I notice it upon wakening). They've done this before but it's different this time. Also, if I sit too long at computer, one or the other foot will fall asleep. I've had BFS syndrome for over 30 years, fasciculations, etc., always a clean neuro exam, but this lung oxygen is scaring me, since they really don't know the cause. It's still within normal limits, only low. 90-95, I think it goes lower at night. I'm 58 and overweight, that was mentioned too. The low oxygen level and hands falling asleep, (read this happened to one or two ALS sufferers at the beginning frighten me. Please give me your thoughts. I've spent the day in tears. Oh, the reason that I went to the neuro again last year was for "sleep starts" which were new to me. He suggested a sleep study, which indicated a low oxygen level. Please help. Thanks. Heather

 

[BethU]

Heather, I'm sorry for your medical problems, but it's quite a leap from waking up with your hands "asleep" to ALS. The fact that one or two PALS posted random symptoms like that, when you have no other symptoms of ALS, is really reaching. And everybody's feet will fall asleep if they sit in one position too long. It's universal. This happens because circulation is cut off.

I'm no doctor, but I've never heard of ALS presenting with problematic lung oxygen levels. (And 95% doesn't sound "low" to me, and you yourself say it's within normal range.) As I understand it, the lungs are not affected by ALS. ALS attacks muscles, not organs. The muscles that pump the lungs are affected by ALS, but not the lungs themselves.

If you have no weakness, I don't know why you are researching ALS. It must have taken a lot of digging to come up with someone who posted about numb hands.

You have a lot on your plate medically, none of which seems to relate to ALS. Let your doctors solve the problem.

Good luck.

 

[heatherjoy]

Thank you Beth. I know how horrible this must sound to you. I think I'm worried b/c of all of the years of BFS (benign fasicuation syndrome). With each bout of it I would think (this is it). I'm probably misunderstanding, but thought that a low oxygen level could be from weak muscles and shallow breathing, (mine dips to high 80's last I was tested last year when sleeping). Since they couldn't find an "answer", I reached for the one that's been in the back of my mind for years. Now that I stop and think, the Pulmonary Function doctor would probably have some "indicators" if it is neuromuscular. I'm blessed that I haven't been diagnosed with it, and pray for all who have. I have to say, I believe I need some help with my emotions, I believe I am very depressed right now, and am not thinking rachionally. I realize that I have actually been worrying more than many people who have actually been diagnosed, how selfish, sad and wasteful of a life is that? Again, I thank you, I needed someone to reach out to me tonight; I feel so lost and frightened. I will continue to let the doctors try and figure this out. Good luck to you and again, thank you for taking the time to reach out to me. Blessings, Heather