Still hasn't been confirmed by the doc but the one test came back positive, AChR Binding AB. I have definitely had some of the symptoms. I thought I was being lazy, but nor matter how hard I try I can't get the energy to do what I use to. I'd get weakness that lasted days or hours. The first symptom was while taking a really hot shower the right side of my face drooped and I felt off. Was driven to the hospital and was told it was nothing. That was 2009.
I've spent the last roughly eight years and three hospitalizations being treated as though I was a mental case. Ive been told they thought I had MS, conversion disorder and mental illness.
Not all of my symptoms are MG though. I lost my vision for several months. I had three doctors see something behind my right eye but it disappeared months later. I have neuropathy, aphasia, ataxia, ptosis, and a few other things intermittently. Problem is the docs don't seem to put that information down except on the rare occasion.
My vitamin D is slightly low. So that's something that will have to be addressed.
I hate to say it but I'm scared this doctor will send me off and tell me I'm crazy. And honestly Im a bit depressed because of the physical limitations I've had. I've not been able to do what I love. I need to work but don't know what to do because I can't son the physical work I did.

I strongly recommend you see ab neuro-opto and neuro- muscular doctors.
heat sun nbd water is bad for you. When your mind says rest you rest!!!
Mike

Did you know that it takes an average of 7 years for a woman to be diagnosed with MG, but about a year for men? An MG expert said that at a conference years ago. Not that men can't have the same issue. Once a doctor actually thinks of MG as a possibility, figuring out whether someone has the disease becomes easier. Many doctors don't even consider MG, for they still think of it as rare.

You aren't at fault for doctors mislabeling you in any number of ways when you had such obvious symptoms. I had symptoms of MG my entire life. I was misdiagnosed at age 10 with lazy eye. Nope, it was fatigable ptosis. I wasn't officially diagnosed until I was 42.

There are those with autoimmune diseases who have clotting disorders. A TIA could lead to a loss of vision.

You can address your vitamin D yourself. Find a good brand and start taking 5000 ICU a day. I personally take 10,000, which my doctor knows. Mine was very low and wasn't improving much with a lower dose.

The physical limitations of a disease can be very frustrating! MG is such an odd disease. The fact that we become worse the more we do, and how much worse over the course of the next couple of days can't be predicted, what we do is often subject to change as well. I take each day as it comes and try to do my best. That way, my expectations for doing what I want remains low, as does my disappointment level!

There are those who have MG and MS, but that is rare.

Try to pull together all of your records. You'd be surprised by what you might find.

As a patient, you have rights. You have the right to a prompt diagnosis and treatment plan. You have the right to not be mocked by doctors and to have "freedom from maltreatment." You have the right to see a MG expert, no matter what this current doctor says.

I know how hard this process is. And having to reinvent your life due to a disease is depressing. But it can also be life-saving and life-affirming.

I hope you will find answers soon.


Annie