... times anyone else with myasthenia experiencing pain like this my doctor says im not in any pain yet it still hurts
I am taking Cellcept (mycophenolate mofetil) and have experienced pain in my knees and hips. It has slowly gone away though. I was diagnosed about a year ago. I had not had any trouble with my back or legs. I did have pain in my neck. I also had trouble keeping my head up when I was tired (neck muscles giving out). Now that I am taking three different drugs for MG, I am now symptom free.
I also have mg, found out 1 month ago. I've had pain in my lower back, neck and legs for years but when I couldn't walk I decided to have it check out. Don't let your doctor tell you if you are in pain or not, you know your body best. Be persistent and find a Dr. that will listen to you. The first Doctor I went to, made me feel as if I was this hypochondriac. I'm on mestinon now for 2 weeks, my lower back, neck and my legs do better. the soarness is still there but not as intense as it was. Find yourself another Dr..
I'm on IVIG and Mestinon. I've had MG since 2011. I too am having a lot of pain especially in the week between IVIG doses. My doctors do believe me which is nice. It takes narcotics to control the pain at times. I agree with other comments, your doctor can not tell whether you have pain. Sounds like he/she doesn't want to deal with it. From medical point of view pain is extremely hard to treat.
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