I was diagnosed with RR MS in 1996 and have been secondary progressive for at least 10 years now. I have had multiple organ involvement, galbladder non-functioning, bladder dysfunction with surgery x2, autonomic nervous system involvement which affects HR, BP, Temp, and other functions. I have had many flares in the last four years that have led to total loss of function of my esophagus, severe spasms of the esophagus, I was recently diagnosed with the bottom half of my lungs no longer functioning due to muscle weakness from MS. I have had two oxidation and HR sleep monitor tests done in the last two months and they both indicate that I need oxygen but the second test was markedly worse than the one done two month's ago. I can't seem to find information anywhere that talks about prognosis. I am a very straight forward person and like to deal with the reality of things so therefore I would like to know if there is any information out there that addresses the prognosis of terminal muscle loss to the lungs due to MS.
There is no single factor that lets us know when our MS patients require ventilatory support, This becomes increasingly common in patients who are wheelchair bound or bed bound with severe weakness of both the legs and arms. One of the first things patients notice is difficulty sleeping especially if trying to sleep flat. Breathing problems are often worse at night and lead to oxygen desaturation and fitful sleeping.
The use of BiPAP can help prevent your respiratory muscles from becoming too tired to work and improved your sleep. Use of BiPAP in this situation can make you feel much better during the daytime
You will need to have a good discussion with a pulmonary doctor to help you with this problem.
We are not very good at predicting longevity very well but problems with breathing and swallowing both tend to be poor prognostic factors.
Good luck to you
Revere (Rip) Kinkel MD
Professor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego
PLEASE NOTE: The information/opinions on this site should be used as an information resource only. This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.