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...
My drooping eyelids and problems swallowing are beginning to improve. It was shortly after five treatments of apheresis and two minor surgeries to implant my temporary ports that all the problems began. It was about three days after my last apheresis that my eyelids droop to the point of functional blindness. The loss of my ability to swallow and talk went soon afterward.
Naturally, I was upset and frightened. How could this happen right after a full treatment of apheresis? I call my primary neurologist, he told me he had no idea what was going on, and told me to call the Oncologist who was in charge of my apheresis. He had no idea either, and said it was too soon to give me another treatment of apheresis. So I call my primary neurologist back and asked for a referral to Stanford University Medical Center. He gave me the referral. I see a specialist in the field of MG this coming Friday.
Oddly enough, my eyelids, my swallowing, and my speech have begun to improve in the last couple of days. I been thinking about it. A couple of days ago I stopped taking the pain medication the doctor gave me following my port surgery. I'm beginning to suspect that it was the narcotic that may have exacerbated my MG symptoms. If that turns out to be the case, I don't think I will ever be able to take pain medication again, without risking a full blown MG crisis.
Do any of you have any experience or thoughts regarding this matter>
Bob
Naturally, I was upset and frightened. How could this happen right after a full treatment of apheresis? I call my primary neurologist, he told me he had no idea what was going on, and told me to call the Oncologist who was in charge of my apheresis. He had no idea either, and said it was too soon to give me another treatment of apheresis. So I call my primary neurologist back and asked for a referral to Stanford University Medical Center. He gave me the referral. I see a specialist in the field of MG this coming Friday.
Oddly enough, my eyelids, my swallowing, and my speech have begun to improve in the last couple of days. I been thinking about it. A couple of days ago I stopped taking the pain medication the doctor gave me following my port surgery. I'm beginning to suspect that it was the narcotic that may have exacerbated my MG symptoms. If that turns out to be the case, I don't think I will ever be able to take pain medication again, without risking a full blown MG crisis.
Do any of you have any experience or thoughts regarding this matter>
Bob
Glad your symptoms have subsided!
-sherry
When unexpected problems occur, that is one of the first areas to explore. Despite the doctors being told he could not have morphine, my Dad received it as routine in the OR and was not told. We can't always prevent the complications, but having the information on hand will help.
There are several lists in the Links Group under "medications and myasthenia" including the western Australia pamphlet, recently mentioned. No list is exhaustive and this does not mean that everyone with myasthenia will have trouble with a listed drug.
(example: propofol.)
These drugs exacerbated my MG symptoms terribly.
But then - I was at a tipping-point with symptoms anyway.
Yet many other Snowflakes, here on DS - have had recent surgical procedures, requiring some heavy-duty meds. Thankfully, our friends seemed to recover well.
(Maybe Mestinon plays a role, here? I cannot take Mestinon.)
We are definitely Snowflakes!
Glad your symptoms are backing down! - Ross