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...
Hi guys! I have been battling with very refractory MG for 16 years. The one question I have never got a satisfactory answer to - MG is auto-immune and so one would expect that with strong immune suppression the disease would be kicked in the butt?? But in my case this is not the case. I am on regular cytoxan, pred and PLEX which keep me neutropenic, leukopenic and lymphopenic most of the time. My blood count is globally low yet I still lapse into crises. I find that confusing. My MG just seems to dodge whatever we throw at it. I have never had my thymus removed because of the risk with my compromised respiration but am wondering if it could not be the reason for my poor response to treatments? Anyone on this site had a thymectomy after many years of disease? I know it's supposed to be less helpful after a year of disease but still find myself wondering if it isn't worth the risk? Also how often should our thymus be scanned? I was scanned at diagnosis and my thymus wasn't enlarged but should these tests be repeated at intervals? Any thoughts would be appreciated. Wishes and strength to all! Ange
I don't have any answers, but another thymus scan might not be a bad idea.
There is always the smoldering infection worry or environmental pollution worry, or the missed diagnosis one. That last just doesn't seem possible, because you do respond, it just doesn't go away and stay away!!!
Sending love, strength, and commiseration, b.
Ange
She said something like --
If your MG was not responding to treatment or symptoms changed over a few months or other problems arose, we would do another test. However, if your treatment seems to be working we would not feel any need to do that.
So, with your ongoing problems, probably wouldn't hurt to have one just in case if it has been a year or two since the last time.
Good Luck
Ange
My MG doesn't stay down, but part of the problem was problems caused by meds. I opted for the thymectomy because women under the age of 60 with moderate to severe MG and no thymoma tend to respond well to thymectomy with decreased severity of symptoms and sometimes even remission.
The only real concern brought out to me (besides the possibility of crisis which did happen) was the increased risk noted in one study for MS, but upon research I felt that this increased occurrence found in the study was about the same as the general population of Myasthenics anyway.
I cannot tell you how things will be for me yet. Neurologist and surgeon are happy with my post-op progression. I'm starting to feel better, but did have a poor breathing day yesterday (surgeon says that is myasthenia, so must slow down.)
Improvement is expected within two years. We will see if the robotic procedure and week long ICU stay was worth the gain. Before surgery, like you, I was getting frustrated and actually felt like I was losing ground.
By the way, my thymus appeared normal on scan and surgery found very large and activethymus with two large lymph nodes (no cancer.)
This answer might not be right for you, but this is what dh and I decided to do. My advice...Research, explore, question, test until something helps.
Hugs