Abby, I wish every single neurologist were altruistic and kind. I wish they would look at every single patient as truly sick. I wish they would consider every single piece of evidence, including honest intention, when clinically evaluating a patient. I wish they would put the horse before the cart when treating a patient, having fully diagnosed them first. And I really wish they knew how to take off their arrogance like a coat at the front door of their clinics.

I'm glad you put this bedside screening up here. I'm sorry you caught me on a day when life was beating me up. I am very sorry if I offended you in any way. My belief is that every single piece of information that could help a patient is important. This is no exception.


Annie

Annie,

Certainly, no offense taken. I am still reeling with the realization that for all that time I was thinking, "If only I could get a positive antibodies test, things would be settled"--and then I hear stories of people like you who did test positive, and somehow that wasn't enough to make the doctors acknowledge it.

I really feel like I dodged a missle. I came in with a normalish SFEMG, no antibodies, atypical symptoms, and a weird gait that the MG doctor had never seen before, though he's seen 800 MG patients. Looking back, it seems almost like a sure thing that I would have been diagnosed as psychogenic.

My point (wait, I think I have a point...) is that I realize that the care I've received is not normal.

Now if I could only get my neurologist to call me back so I can start getting treated...but realizing how unusual the quality of my care has been so far makes me more patient.

I hope you can get a little relief, even if it's just temporary. Today was warmer than freezing for the first time in I don't know how long--I stepped outside into the sun and realized how much I've missed it. Let's hear it for springtimes, both meteorological and emotional.

Abby

As much as I rag on doctors, I am lucky that my general practitioner and the radiologist suggested that I had MG.

(After I had been misdiagnosed with Bells Palsy and CMT, about ten years prior.)

Otherwise, I would not have had a clue of what I had. Plus, once it was strongly suggested I had MG, I still had no time to digest the news or do any kind of research, since my father was in the hospital dying.

I am grateful that throughout all of that I withstood one neuro giving me the brush off, and thankful I had the sense to try again, because that neuro confirmed it.

However, what I learned is that the more unique you are you get different cooks in the kitchen telling you what you have.

After, I got my diagnosis I still wanted to know about the thing in my chest; the thymus, something else I didn't know even existed.

Anyway, I got two more doctors saying I didn't have MG, then I get one of them changing his mind. When in reality, I just wanted to know about my ever growing thymus. I didn't need their opinion on my diagnosis of MG, but like a-holes everyone has one, but I am still waiting on the answer on the thymus.

Stella, I am grateful for the bit of knowledge that you bestowed upon me, because I tried that blink test. That old dude did better than I did. Keep the information coming.

went to try the test after 12 or so blinks i stop did not want to ruin my eyes for the day lol

Sorry all of you are going thru this. Even when you finally get a diagnoses there is no secure place, really. They even question each others diagnoses. Sure is quite the learning experience dealing with Neurology. Tests really do not encompass reality. Eveyones body is so different. And every day is so different.