Like others who have posted here, I have a progressive neuromuscular disease in my case progressive relapsing multiple sclerosis. I began having diapraghmatic weakness documented with flouoscopy and sniff test. i am on oxygen 24/2, very short of breath, at rest and at exertion, have 02 sats even with oxygen that often drop into 80s. PFTs show low DLCO and mip and MEP test 20% of normal.
Pulmo and neuro don't know what to do or have much to offer. Have never treated a patient like this. Another pulmo suggested a vest for breathing but didn't know where to get. Asked me to find. A different pulmo suggestd ventilation last year and i got scared and changed docs.
I have rheumatological involvement with inflammatory arthritis. To date, just worked up for lupus, sclerodoma, etc. and have some attributes of many but not all.
With my docs clueless, I feel the ball is in my court to find more knowledgeable doctors. Current docs seem to take the path that I will die eventually from choking or hypoxia etc. Where should I look for a vest to help with respiratory (I saw someone with a post polio vest) and where do i turn to decide when need to vent.
Current pulmo put me on bipap but it was extremely painful to wear and the muscles fatigued in diaphragm way too fast and doc acted like i was non compliant but had no solution i could comply with.
I was diagnosed with MS in 2004 at age 42 and I'm now 47.
This discussion is related to
respiratory muscle weakness.