I know you that most of you guys already do this or know how important this is, so this is mainly for any "newbies" who are in limbo.

If you don't have copies of all of your test results, get them. Why? Well, doctors not only don't have to tell you all the results they sometimes leave things out on purpose. For example, I have had atelectasis (a small collapse of a lung from my not being able to breathe in well enough from MG) on x-ray or CT which they haven't even told me about. If I know I have that, I use an incentive spirometer or breathe in deeply (if I can) to help alleviate it.

Case in point. I first noticed I had ptosis in March 2000. I went to see an MG "expert" in April. He pooh-poohed everything I told him, especially the part where I thought I might have MG. Some neuros do not like it when patients "think." Or talk. One of his comments, when I described how weak my muscles became when I ate food like a bagel (a soft, warm one) was "It takes a lot of stamina to chew a bagel." Not the comment of a nice doctor. He only ran the AChR antibody tests. They came back negative. The modulating antibody was at 18% on a range of 0 - 20%. Because of that one negative test, he didn't even do an EMG. I wondered back then too if an antibody result could be "on its way up." Two months later, I saw a neuro-ophthalmologist who said I indeed had ocular MG.

In March of 2002, my antibody tests were rerun. The doctor said he would do the AChR and the MuSK. Well, they did the AChR at a lab that wasn't as reliable as another one. After getting the results, he sent the vial meant for the MuSK lab to another lab to redo the AChR again. I never got a copy of the lab. Even after I requested the antibody tests specifically, I never got that second lab. The results were buried in his notes, which I often don't read. Why would I? He had undiagnosed my MG during that last appt. (when he knew the results), later dropping me as a patient and "terminating" me from the clinic. Why?

Nearly seven years later, when I was writing up complaints to our State's medical board about some doctors, I finally read those notes. I had a positive antibody test. SEVEN years of not knowing for absolutely sure that I had MG. Seven years of going to a neuro out of state and spending all that money. When I asked the clinic again for the labs, seven years later, they said they didn't exist. I did some digging and called the lab that did the original lab. They found it, thank goodness, and sent it to that first clinic which then sent it to me. Good grief.

The doctor in question had written in his notes that the antibody was "slightly" elevated. No where on the original lab did it say "slightly" or give a range of results like "slightly" or "moderately" or "highly" elevated. It simply said that it was H as in "high."

So why would a doctor keep a test result from a patient, allegedly? To keep his doctor pal, whom he mentioned during my last visit, from being part of a medical malpractice lawsuit. That first neuro had been dead wrong, had treated me poorly and not even done all the MG testing. All based on prejudice and whatever other reasons he had for not treating me well.

Doctors are human. They make mistakes, sometimes on purpose. Test results speak for themselves and you need to get ALL of yours if you want to, or need to, build a "case" for what is going on with your health. It's sad that it has to be this way sometimes. And, no, I never even hinted at suing anyone!!!

I've had so many examples of this throughout my life, where a significant test result is not given to me or told to me. So please don't assume that all is well just because a doctor says so. I'm not saying don't trust your doctors. You absolutely need to know the condition of your body and you can't fully know that without all of your test results.

This especially applies to breathing tests. So often, neuros will say it was a "lack of effort" causing the poor result. Those tests, when done by experts who keep you doing it consistently, are reliable and MIP and MEP reflect neuromuscular weakness. Also, getting a baseline reading of those tests are good so they can compare the results when you get worse.

I went through a significant amount of pain for years due to the "games" these doctors played and I wouldn't want any of you to go through that. Get your test results. Then get a second opinion.

Annie