I know this is an older post, but I wanted to respond to it because I've been through so many misdiagnoses, doctors who kept telling me my issues were minor, and doctor who didn't even believe I was sick that I think my experience has been a little different than the average MG patient and I don't know if it might help anyone in a similar situation.

While my condition has gotten gradually worse, I can't remember a time when I was pain free. Initially, I attributed the pain to sports, then when I couldn't play and things kept getting worse, I started realizing that something was wrong. My senior year of high school are when things really started to get bad, and then in college they got worse. But I think this is when the Myasthenia began as I started having eye trouble at this point.

Anyway, to make a long story short (I could write a novel), about three years ago I was DX'd with impinged hips, but that didn't explain all the neuro type symptoms going on (this was after about five years of being told my trouble walking and my back pain was a minor arthritic problem, and not being believed when I told them it was something different). At this point I stopped going to my current neuro, as he labeled me "under control" as far as he was concerned.

About this point, I finally realized that the doctors either had no clue what was wrong with me or really didn't think anything was that wrong. I also realized that whatever I had would probably kill me before I was 35, based on how fast my health was going downhill. This bothered me for several weeks, until I realized that death was better than how I'd been living and that I wasn't magically going to get better as my symptoms were getting worse.

Somehow, coming to terms with this actually helped me emotionally. I, honestly, haven't really been upset about my illness since then until I found out my cousin may be going through the same thing.

At about the same point, my father and my orthopedic realized that my problems were probably more neuro than ortho and encouraged me to see a neurologist (well, my dad encouraged me, but there's only so much he could do...my orthopedic said he wouldn't fix my hips without the okay from a neuro).

I decided I wasn't going back to the guy who kept telling me I'm fine (even though he's known as the best in the city), and he wouldn't let me switch to his younger partner who was a neuromuscular expert, so I called a new practice took first available. He recognized the MG right away, but cleared me for surgery and told me to come back later (which was really dumb). I stopped breathing during the surgery, then he wouldn't treat the MG until I had more surgery. I switched neuros at that point.

Things at this point at least stabilized, but the pain never got better, nor did my walking despite the hip surgery. In the last month, I've discovered this is from Stiff Man Syndrome and I've actually been much better than before. I'm still in pain, but not as much as before and I can walk again.

I've actually gone on a bit of a buying spree the past couple of weeks as I didn't really tend to think past my immediate needs, plus I had to give up photography as a hobby as I wasn't able to walk. Besides a new gaming computer, and a good pair of headphones (which actually hurt to use until recently), I haven't really spent any money and wasn't able to travel. I did waste money on half a dozen ergonomic chairs and mattress pads that never helped.

Anyway, getting the MG and the SMS under control has actually made me realize that I can, hopefully, live a somewhat normal life. I understand that most people here are devastated by their loss of functioning as it typically happens over a quick period and I try to be sensitive to that. However, I feel like I've had a bit of the opposite effect. Three years ago, I thought I was dying, and whats worse is that I was okay with it. If I hadn't been diagnosed with MG and now SMS, I'm not sure where I would be, or what condition I would currently be in.

I guess my point is this...don't give up. If you think something is wrong, it probably is and there is probably an answer somewhere. In my case, the same news that I realize everyone else is having trouble dealing with has probably saved my life. In the state of mind I was in a few years ago, however, being told I had ALS and would be dead in three years would probably also have been welcomed news. Knowing whats wrong and being able to deal with it is better than giving up because everyone says you're perfectly fine when you know you aren't.