I am so frustrated, I'm not quite sure what to do! It already took 48 years to get a diagnosis of myasthenia gravis (MG) - the entire time there were symptoms to go along with it. Now, it's a goose chase again, but this time to find MG's friends!
Of course, I'm aware that if you have 1 autoimmune disorder, there could be more. But I never thought there was a "huge" possibility I had another autoimmune disorder all along. Especially one that started about the same time as my MG symptoms, both flaring at the same time. What came first - the chicken or the egg? It's so mind boggling!
The symptoms that are different than MG ... well, they're never active when I'm at the doctors. When I try to explain these symptoms, I get that look from doctors and neurologist like they really don't believe me. As if I'm making it up. If you haven't figured out by now, this is kind of a rant. I'm quite sure others have been here too.
Living with symptoms
I have lived with these weird symptoms almost all of my life. But even if it was just for a short while, it would still be frustrating. I have been told many times they weren't anything and to stop worrying, or those symptoms could be caused by anything. "Just give them a while they'll go away, you'll see everything's fine." ... Friends and family are so supportive, sometimes ...
Getting the diagnosis of MG was actually a huge load taken off of my shoulders! Even if some "friends" and family still don't care to know about myasthenia gravis.
It's not the MG
It's funny how almost all of the doctors and neurologists I have ever seen thought I had either a neurological disorder or a neuromuscular disorder. There was a couple misdiagnoses, but never once was MG suggested or tested for.
After almost 2 years of taking Mestinon and CellCept, along with almost going completely off of the prednisone, most of my MG symptoms are reasonable. They are still not 100 percent, but it seems like every month is a little better.
Unfortunately, I just realized about 3 weeks ago that some of these symptoms had nothing to do with MG. The fatigue is just relentless and Mestinon does not always provide relief. I've started dropping things more often and just using my hands in general has become more difficult - they are so weak!
Time to see a rheumatologist
I already knew I had arthritis in my spine along with a whole host of other problems in there. I found that out for sure last year when I had an MRI. I just thought it was age-related arthritis.
But 3 weeks ago all that changed. For the life of me I couldn't sleep, the pain running down my spine was so bad. My knuckles turned red and swollen on both hands to the point of not being able to use my hands at all.
So, the tests have been sent in and now I'm just waiting for the results. My doctor has already told me she's pretty sure it is rheumatoid arthritis.
Have you made any MG-friendly adaptations to your home?