Originally Posted by MissyGirl

Sept 26 will mark 10 years I've been dealing with this monster. I woke up one morning and choked on Cheerios. Came out of the blue. By November I had double vision, which would come and go. I got tentative diagnosis (and I self diagnosed) MG also in November but since I'm seronegative, no neuro was willing to commit to the diagnosis. A trial of mestinon produced nothing more than an allergic reaction.

I went into denial for a few months, until some choking episodes which required a Heimlich bounced me back into reality. I know now I was technically in crisis then, as I wasn't even able to handle my saliva, but I recovered in time without going to the hospital.

Finally I got in to see my neuro of choice and within 3 minutes of speaking (slurring) to him, he said, "I concur with your diagnosis." He wanted to hospitalize me right then for PEX and IVIG but I was scared, and also still breastfeeding my young daughter. I decided to "hang tough" a bit longer.

In 2000 I finally relented and tried Prednisone, which worked impressively at only 10 or 20 mgs. I had a thymectomy in April of that year to remove my perfectly good thymus (I still greatly regret that decision) and promptly went into the worse downspin I've experienced so far. It took months of high dose pred, and IVIG and finally Cellcept to gain control. By control I mean "two steps away from crisis."

Miraculously, out of nowhere in Aprill of 2002, I suddenly lost all of the MG symptoms. It would take a LOT of overdoing for me to feel any trace of MG. I was still on pred/ivig/cc, but I was symptom free. Note that I didn't say REMISSION, because it was NOT a remission. I enjoyed this symptom free period for 2.5 years.

In 2004, it all went away again. The death of my brother and a car accident happened, quickly followed by an explosion of MG symptoms. I've battled with only mild success since then. I've gone up to 3 mos without double vision since 2004, but right now I go about 50% of my time without it. Dysphagia to some degree is always present. I found out I have MuSK MG, and those with that type tend to have most of the symptoms from the neck up, and that is me to a "t."

I am on IVIG, Cellcept and Solumedrol (I infuse with the IVIG). I have bad days and horrible days and the occasional good one. I actually sometimes hate to have a great day because, inevitably, I'm in for a long flare up within a day or so. Hormonal fluctuations cause everything to go wrong.

Do I want remission? Heck yeah! Do I think it will ever happen? No. Hoping will not bring it for me any more than the thorough treatment I've received did. Is life as I knew it over? Probably so. However, I have not done too badly. I've raised my daughter, who is now 11. I run a successful internet business from home (had to give up my career of choice.) I am able to go on really nice vacations and have hiked in Colorado, swam in the ocean, roamed the streets of NYC and gone down the tallest, fastest water slide in the world--all with MG.

Do I think MG is a "blessing"? NO NO NO and NO! I despise it. However, it's not going away so I work with it. It calls the shots for the most part and I deal---my family deals.

Hope this helps.

Missy