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...
I am fresh out of the hospital after 7 more days...that makes 12 days for the month of June, ugh. There was only a week in between stays.
The picture looked very similar both times: breathing was very bad, lost ability to walk, no strength in almost all areas in a very rapid decline. Bedside breathing tests were done every 4 hours and arterial blood gases every 12 hrs, then every 4 (God help me!), then they switched to venous blood gases out of my port.
The interesting thing to note was my potassium was low, as was my sodium and my calcium. It turns out that electrolyte shifts can be particularly hard on MG.
The problem is, although the MG is WAY better from 5 more days of IVIG, the low electrolytes have not come up and I don't feel quite like myself so I am concerned I will have problems staying out of trouble. But, I am thrilled to say that I am walking again now independently as usual and my strength is back!
Anyone else dealing with electrolyte issues?
debra
The picture looked very similar both times: breathing was very bad, lost ability to walk, no strength in almost all areas in a very rapid decline. Bedside breathing tests were done every 4 hours and arterial blood gases every 12 hrs, then every 4 (God help me!), then they switched to venous blood gases out of my port.
The interesting thing to note was my potassium was low, as was my sodium and my calcium. It turns out that electrolyte shifts can be particularly hard on MG.
The problem is, although the MG is WAY better from 5 more days of IVIG, the low electrolytes have not come up and I don't feel quite like myself so I am concerned I will have problems staying out of trouble. But, I am thrilled to say that I am walking again now independently as usual and my strength is back!
Anyone else dealing with electrolyte issues?
debra
Love, Cathy
I went for a record ten plasma exchange sessions in May, usually i go for five at a time. But neuro thought more sessions, meant longer benefits.
But then, guess what only a week out of hospital, i felt superhuman, almost zero symptoms.. then got struck with gastroenteritis. Severyle dehydrated, low electrolytes and was back in hospital for three days. o h the joy of having MG...
since then, symptoms are back, droopy eye, difficulty swalowing and sometimes feel it in my arms. Usually arms are rare for me.
Then started chowing bananas, dates, juice, anythign i thought had potassium and arms improved.
only eye and bulbar muscles affected towards end of day.
I live in fear of crisis, as far as bulbar muscles are concerned, because i have difficulty swallowing.
So far I have not expereinced crisis in the 2 years since diagnosis, and I;m terrified of it as i have no idea what to expect.