Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hello Friends!
I am new to the myasthenic crowd. Nice to meet you and all that. I have severe generalized MG and was recently intubated. It sucked. That's neither here nor there. Im writing because I want to know what kind of adaptive equipment you use? What is helpful?
I am on oxygen now. I have a reclining wheelchair, walker, and cane. Im working on getting a medalert bracelet but I hate bracelets. I saw someone somewhere recommended a recliner for sleeping. I thought to myself "that's genius!" And figured I would see what other genius ideas were floating around out there.
Thanks for the help!
Welcome to the group. Sorry you are having so many problems.
Since your immediate problems include breathing, I can tell you what I did.
One machine that helped me a great deal was a CPAP (or BIPAP). That is a machine for sleep apnea mostly but also can be very helpful for breathing problems. When my MG was the worst and I had breathing difficulty, I put on the machine to make my breathing easier -- during the day or whenever. It pushed air in and eased off to let me breath out. It stopped me from getting panicky when I felt like my breathing was not working -- 15-30 minutes on the machine and I was OK again.
I was diagnosed with sleep apnea a few months before my MG diagnosis. The two were probably overlapping problems. The CPAP used at night also made it so I could breath OK then too, and so I didn't have to take so much mestinon for overnight.
Mayo Clinic did a research study where they tested using a BIPAP machine instead of intubation on folks coming with an MG crisis. In many of the cases, the BIPAP was enough, much less invasive, easier to get off of and of course much cheaper intervention. You might ask your doctor about one. To get one through insurance, you need a prescription. You can find them used on craigslist for a few hundred dollars, but they need a medical person to set up for use. You probably could get a trial one too, especially if you quote this study to your doctor.
The research study is at this link
https://www.ncbi.nlm.nih.gov/pubmed/18195139
The conclusions: CONCLUSIONS:
BiPAP is effective for the treatment of acute respiratory failure in patients with myasthenia gravis. A BiPAP trial before the development of hypercapnia can prevent intubation and prolonged ventilation, reducing pulmonary complications and lengths of intensive care unit and hospital stay.
Good Luck
Russ