Conflicting Dx about MG
Hello there,
I have seen two neurologists for the condition that I have. My leg muscles (especially on my right leg) get fatigued as the day progresses. I am 71 years old and have an athlete and very active until this condition set in about 18 months ago. I have been stumbling around (much like a stroke has occurred and am now tripping over things like rugs, mats, any uneven surface, etc. and have even had some falls. One neurologist did extensive blood work that came back positive for the LRP antibody (but negative for the other three potential antibodies. We have done MRIs of the spine, head, neck and everything is pretty normal for a person my age. We did a CT of the chest to check the Thymus which came back normal. We have done EMG and nerve conduction studies...and even a Single Fiber EMG test which ALL came back normal. So bottom line, the only thing with all of the testing that has come back positive is the one antibody test. This neurologist even tried IVig therapy which didn't help. The other neurogolist that did the Single Fiber EMG test doesn't think that I have MG. So here I am in the middle with two conflicting opinions.
I do have UC that was diagnosed about 25 years ago so it does appear that I have an autoimmune disorder. That may be why the first Neurologist went down the MG route.
Has anyone experienced anything similar to this?
Thank you!
Mark
Hi David,
Thank you so much for replying to my post! This is all very helpful information!
I am having the blood work repeated for antibody testing on Monday.
How long have you had the MG diagnosis? What are your symptoms? Have you had the EMG and nerve conduction studies done? How long have you taken AZA and how have your symptoms improved since taking this drug?
Again, I appreciate you for replying to my questions!Hi Mark. I was diagnosed seven years ago, but I had symptoms for many years before. It started as a droopy eyelid and double vision. It exploded into gMG in 2020. I was hospitalized for three days with a serious flare. I have had muscles weakness so bad I have been totally paralyzed for an hour or more. Neck weakness so bad I couldn't hold up my head. Etc.
The blood test confirmed AChR binding antibody, so no further testing was needed. Therapy began immediately. First it was prednisone and pyridostigmine (Mestinon). Pyrid worked great but gave me the usual ups and downs. After a year, I was started on azathioprine. It took almost another year (10 months) for it to take effect. After it did, I was able to stop pyridostigmine and all but 5 mg of prednisone. I am now totally stable. I am still weak. I have trouble looking up or reaching high shelves. I walk around the house but use a rolling walker outdoors and when shopping, for safety. I have to stay out of the sun and I try to avoid big crowds with lots of germs. Card games at home with friends are great. I live on a lake in Wisconsin, feed birds and deer, build simple projects and have a truly wonderful life with a loving, supportive wife. I spent years researching and wrote the book "Myasthenia Gravis: The Owner's Manual."
My message is that you will have to learn to accept your MG and the limitations it imposes on you. Reject the anger and sadness. Once you do that, you begin to see all the things you can still do, and all the dreams you can still have. You will live a different life, but it can be a wonderful, happy, productive, fulfilling life.
Best of luck to your Mark, and thanks for joining our community.
Hi Mark. I also replied to your post on Cellcept. The indication of LRP4 antibody in your blood is not insignificant. Roughly 10% of MG sufferers are LRP4-antibody positive. The presence of other muscular symptoms would certainly indicate MG. If the mestinon you are taking helps the symptoms, it's a slam dunk. MG sufferers often have more than one autoimmune disease, so the ulcerative colitis is not surprising.
Listen to the doctor who prescribed Cellcept. He's taking you seriously. Take the other doctor off your Christmas card list. LPR4 antibody MG is sometimes hard to treat. You're doing all the right things. The first year is the hardest. Just be confident that your symptoms can be controlled and you can live a happy, productive and fulfilling life. Though pole vaulting is probably no longer on your bucket list.In a few months, ask your doctor to repeat the blood tests. The amount of antibody, especially the AChR antibody, varies wildly and for no known reason. One study found that a significant percentage of people believed to be seronegative actually had a hard-to-detect level of AChR antibody. If your doctor can detect another contributor, it will help him treat you.
