ALS Respiratory Onset

[Chrismarie]

My husband has been having increasing breathing problems and weakening starting a year ago. Any exertion wears him out. After many tests for many issues, nothing has been found. However, 2 EMGs found issues in arm and leg. They say they can't diagnose als without three markers. Maybe it will worsen and become diagnosed. Frustration, since his breathing is his major issue. No stiffness, falling, swallowing issues, and only minor twitches. His breathing was so bad his sleep test revealed over 100 breathing stops per hour. He has good oxygen levels but his co2 had been high. Thankfully a bipap has eliminated that problem and he now sleeps very well. It seems doctors can't diagnose it even though it is his worst symptom. Other diagnosis have been pretty much ruled out. He has started IV immunotherapy. We are hoping!!! Any one have current experience with similar respiratory onset? Thanks.

 

[lgelb]

"Three markers"? Do you mean three regions, or...? There were no abnormalities on EMG in the thoracic or bulbar regions? Is he getting IVIG?

At any rate, since you are having difficulty getting a diagnosis, a second opinion at another center is always advisable. You should have access to several good choices in Boston.

 

[Chrismarie]

Thanks for feedback. We do have good access to care and his second opinion exam/EMG was done at an als specialty center. And yes, no abnormalities in thoracic or bulbar regions. And yes he is getting IVIG. Breathing difficulty continues as his significant problem. Hope this helps.

 

[WeirdTim]

Mod note: Please see Tim's later posts. His diagnosis was changed and ALS was ruled out



My sleep study found that my O2 levels were at 60% while sleeping and I stopped breathing 124 times an hour. So for 14 months I was heavily deprived of O2 at night. Once I got my bipap machine the middle of January, everything slowly started getting better. But then I was diagnosed with ALS in the middle of April of this year after an EMG test. I have twitches but they aren't all the time or severe. No muscle cramps and I function pretty darn well although I will get winded, but O2 levels still remain above 90% while walking or doing regular activities. I've doubled my lung capacity since diagnosed in April by doing several diaphragm building exercises as well as riding my exercise bike daily and doing light barbell exercises. I'm going for my second opinion on Thursday.

Neurologist told me the pain in my neck and shoulder was caused by ALS and me loosing muscle mass. Told them they were wrong because if I go to a chiropractor I feel fine for several days. Switched primary doctors and explained to my new doc about the neck and shoulder pain. He looked at the MRI's the neurologist took and saw severe damage from arthritis in my neck. Had told my primary docs and neurologist I've had arthritis since the age of 9, but they never listened or charted it. I'm now taking an anti-inflammatory pill twice a day and have zero neck pain. Weird right?

Just remember, some docs need to learn to open their ears and not their mouths. I was always afraid to doubt a doc or give them an opinion as I do not have a medical degree or experience. After the last year, I do my research and make the docs listen and I suggest that everyone do the same thing.

 

[Chrismarie]

Thank you, Weird Tim, but you sound like Smart Tim to us. You have similar issues and experience. We feel the same about doctors. They are wonderful and dedicated, but too often they minimize our comments and tend to focus in their own areas only. My husband also does the hand weights, stationary bike, and breathing exercises. We are interested in what diaphragm building exercises you are doing. Sounds like you are having good success. Stay strong. Keep us updated. There aren't many like us around!

 

[WeirdTim]

In only 41 and I'm not taking this without a fight.

Will lay flat on the bed with my bipap machine on and place a three or five pound weight on my stomach. Then breathe all the way out and then some.....and hold it for a few seconds. Do the same when I exhale. Will do this while watching tv at night for half an hour or so.

Then after my exercise bike ride after work I use a breathing exerciser that restricts air flow making your diaphragm work harder. Usually do this ten or so times. Found it on Amazon for under twenty dollars.

Also throughout the day I will breathe to extremes by forcing my inhale and exhale motions.

It starts to hurt somewhat but before I started I couldn't breathe laying flat on my back with no heads support, now I can. I also started using the weight on my stomach without the bipap on but it's tougher and other progress is sdliwer, but there is progress.I

I breathe with my diaphragm and not rib cage. After carrying a oximeter around and checking O2 levels when I am exhausted, then started seeing improvements....that provides hope.

Hope that helps.

 

[WeirdTim]

You're right, there aren't many like us around.......I'm confident that will change one day.