Dear RestorativePose-

I am a 25 yo F, and was also recently diagnosed (February 2012), although I have been told that I have had the disease for the last 15 years because my double vision and droopy eyelid (hallmarks of MG) started when I was 10 and was just never picked up my by eye doctor (he even did surgery to correct the double vision!) I have an abnormal EMG, but the first round of blood tests done by my 1st neurologist including (I forget the specific name) came back negative as did the genetic markers. I am waiting for the antiMusk results. If that comes back negative there is one more to do- make sure they test you for all 3- I wasn't even aware there were 3 tests to do until my bloodwork came back negative and I was told the same 20% statistic- I have been told it is important because some kinds of treatment are less effective with certain antibody types; and who wants to waste more time.

In December I was very run down in my residency and working as a waitress. I was also the primary caregiver to my mother who has another auto-immune disease and was getting chemo. I am very active and always skipped the elevator and instead would walk up the 5 flights of stairs to my office and then suddenly would be exhausted by the 2nd flight. I too had extremely odd right sided chest pain and couldn't walk more than 20 feet without coughing and needing to sit down. I would start the day off great and by 10 am have no voice and no energy. I figured something was wrong with my right lung as my left lung had freakishly collapsed when I was 20 and I had been warned that the right one would collapse at some point in my life. IMy anti-x-Ray internist was convinced it was bronchitis/pneumonia and put me on medications that flaired up the then un-diagnosed MG. I would up in the ER 9 times- and 9 times was told the x-rays were clear and it was asthma- although the treatments did nothing but make me cough more and make me even weaker.

Finally in February someone called a neuro consult and the neurologist walked in the room and instantly knew I had MG because of the history of double vision and she could see the ptosis. As for the chest pain- the CT showed that my Thalmus is normal but after all my x-rays films were reviewed again by a different hospital it appeared that I had 2 broken ribs the entire time, most likely from all the coughing.

Through all of this I saw quite a few doctors who were convinced that there was nothing was wrong with me. The pulmonologist still swears that I don't have MG but rather this is anxiety (I have since taken him off my case), no matter how many other physicians call and write to him telling him that I do in fact have it. There was one point where I begged my family not to take me to the ER when I couldn't swallow because I was afraid they would call a psych consult.

The bottom line is that I have learned to trust my body. It's never wrong. In hindsight I remember times as a child where I would tell my mother that I felt "mushy". That feeling is the same one I have now on a bad day. I can't take the 5 flights up and down four times a day like I used to and don't think I will ever be able to but I haven't cancelled my gym membership either; I'm hopeful my doctor will eventually let me at least walk on the treadmill.

I think you also have to find a doctor who trusts your instincts- you will know when a treatment is working and when it isn't- the first doctor I saw thought Mestonin was the be all and end all; when I wasn't getting better he kept increasing the dose and frequency. I wound up with Mestonintoxicity and back into crisis. I found a wonderful neurologist who decreased the dose and put me on IVIG. When I am not right all I have to say is "I don't feel like me" and she knows something isn't right she doesn't waste 20 minutes of my energy grilling me with non-sense questions like "are you taking the Mestonin" . She decides how to fix the problem and quickly. So don't be afraid to switch if your not comfortable- there are so many people here I'm sure someone will be happy to give you a regional recommendation.

- Nicole
Hope some of my long rambling helped!!