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...
Mary.
Joe
We are living in a world of 'specialists', where my urologist doesn't know how to deal with ppl on immunosupressants apparently. My neurologist doesn't know how to deal with patients with prostate cancer, and my primary can't deal with either of these issues.
This is why your information is so important to me. Thanks again.
wanted me on as low a dose of prednisone as possible( I got down to 15 every other day.) This is because ( he said) it slows the healing. My healing was fine. He had no problem with me being on cellcept. My oncologist said sometimes they treat malignant thymoma with prednisone and have had good results. It lowers your immune system , but I guess it also slows the cancer. Two oncologists I spoke with said to continue with the cellcept. One said I should avoid it. So, because it has improved the quality of my life and I'm unsure,I do take cellcept. Very confusing.
Judith
i also had to get off prednisone,did a quick wean from 15mg to 0 in 4 weeks guided by my neurologist. My docs all agreeed I needed to be off meds so my immune system would be at it's best for me to heal quickly and without complications.....mission accomplished!!!
I see my neuro in next week or two. My arms and legs are def weaker but overall I am survivng ok. fortunately I am off work and can sit around house alot.
the reason my infection got so bad,docs say is because the meds masked the symptoms....fever and pain(prednisone prob kept the swelling down). I didn't feel pain until I developed holes in intestines.
also I didn't start to notice increased weakness until I was off the cellcept for about 3 weeks.
I did have a colonoscopy while on both meds and no infection or holes were seen even tho this test was done 6wks after and 3 wks before major painful flareups of the infection which required 9days in hosp each time. Maybe your doc is concerned something might be missed due to meds.
hope this helps and good luck with your procedure!!