Lindie, my heart goes out to you. I know exactly what you're going through. It's incredibly, unspeakably stressful to have the constant worry about when you're going to be homeless and unfed. Plus, it's not just homeless and unfed, it's homeless, unfed and incredibly weak and sick and vlnerable. Nobody should have to worry about that. Nobody.

There are many diseases that wax and wane. I've learned through all of my research that there are a lot of odd, neurological disorders. For instance, one I've just been diagnosed with is CPT II deficiency. It's a disorder of the lipid metabolism in every cell. What happens is that if you have low intensity exercise (like walking) for over 30 minutes then your cell metabolism shifts over to using mostly fats as opposed to glucose for energy. Well, if you have a faulty fat metabolism then you crash (sometimes, there are a lot of factors that come into play). So, in a way it's like myasthenia gravis in that it's a fatigueable problem. It has the same randomish pattern that can drive mg patients into thinking that they're crazy. Anyway, that's just one of many diseases I may have and there are others that I've looked into which can cause some of the same issues as mg. On the other hand, there are plenty of folks with mg who don't have a positive antibody or sf emg results. If it's any comfort to you, I *do* have positive antibodies discovered (at my insistence) in 2007 and I fought like heck for almost three years to get any help (and I've been sick for 9).

If you would like to talk about symptoms and possible diagnoses you can send me a pm.

My biggest advice for you would be find another neuro. Do you feel comfortable posting which state you live in? If you're lucky you'll live by one of the few, reliable mg experts. If you can travel to the nearest one it will definitely be worth your while.

You don't need a diagnosis for disability but you probably do need a doctor who will back you up. Officially, they don't require a diagnosis, but in my personal experience if you say a known diagnosis to anyone it helps for them to grasp the severity of your illness, particularly if it's something they know like ms or muscular dystrophy. Mg gets yawns because people don't know about how awful it is. Anyway, I do think a diagnosis would help but if you have everything documented - pictures, videos, strength tests from your doctors, anything and everything - that is supposed to be enough. They're not looking at what you have so much as what you can do so if you can show that you cannot sit for six hours, stand for 2, or whatever hoops they need you to jump through than that should be enough. Of course an mg diagnosis will get you on the fast track. But if you don't have the diagnosis, what can you do?

Forgive me if I'm telling you things you already know. It sounds like you're ahead of me in the disability process.

You're mother is one smart cookie! I wish I'd had a mother to tell me to apply years ago!

If I can help you in any way, don't hesitate to pm me.

Ally