Yes, Harsha, that is very ironic! Welcome to the forum!

Yeah, 25 is young to have this disease! But it is manageable. The treatment options need thinking over thoroughly, in terms of your age, family history, life goals, etc. Side effects of MG treatments vary and not as simple as a doctor writing a prescription. Imuran, for example, needs to be given after the TPMT test is run. Steroids often cause disease states! So there is a lot to consider, such as a thymectomy.

You are fortunate to have had the disease diagnosed before you had a MG crisis! Though it sounds like you came close. There are many things to know about MG and how to cope with having it.

Curiosity is a normal thing. Doing research in an effort to figure out what might be causing your symptoms is not self-diagnosing! That is being your best patient advocate!!! I applaud you for doing that. I wish more patients would do that—and then work WITH doctors to figure out what is wrong.

Doctors are not all created equally. They have a great deal of medical knowledge, but that doesn't always translate into the type of knowledge needed to cope with a disease. And some neuros only know about MG from that 2 or 3 page spread in a medical book. If they aren't curious about the disease, they might only learn the basics.

Being diagnosed can take a while. Once being diagnosed, there is a great deal of relief to know what had been causing so many symptoms! Yeah, there can be a lot of loneliness. MG can be hard to describe to others. Take some time to learn about the disease at either Home or Muscular Dystrophy Association so that you can address any questions or concerns by others. Well, and to better help yourself, of course!

Keep asking questions. MG has a high learning curve. It is not a "static" disease and can fluctuate from hour to hour, day to day. MG is also not the same for everyone. Take some time to adjust, write down any patterns of weakness for future reference (that might help your neuro too), and just take it slow.

I am someone who doesn't like to sit still, so I can appreciate what impact this disease can have on someone so young (I've had it my whole life, diagnosed at age 42). Don't lose hope, but don't be reckless either. The worse MG becomes, the longer it takes to recover. You don't want to be in an ICU, hooked up to a ventilator (worse case scenario!) only because you just "had to" go out in 80 degree weather to play! Ditto on what Mike said. Stay cool and nap. Seriously. Naps are crucial to mammals as well as to those with MG. We're the only mammals who don't listen to that inner clock and don't take naps regularly.

And, if you need to, dial 911. If you're weak, don't drive yourself in! And call your neuro if you become worse, okay? Holler if you need more information.


Annie