Hope it works out for you. Having the right doc can make all the difference

You don't have a PPO eh? or at least a good one? HMOs are useless in our cases. If your PCP isn't top notch and is confident to research and recommend experts outside of his physical area you get stuck with whatever local network providers are available.

There's just no way to get competent treatment with a rare disease like this without relatively easy access to experts and a PCP that actually cares about you more than being sued for malpractice. I had to leave the state (MA) before I found someone competent, and that was after almost 3 years of referral after referral...

I don't know what PPO or PCP mean. I don't have insurance though so its hard for me to see new doctors since I have to pay out of pocket and I have no income. My mom pays for my doctor visits.

PCP - primary care physician
PPO - preferred provider organization, basically means you can pick your own doctors.

Just read your profile. Go back to school, even part time, and get on their health plan. It's better than you realize, in fact that's how I got my first treatments. A university will provide a health care plan that is comparable to many employers for a fraction of the price. Once in school you can apply to the disability services, and get a pass for the credit requirement to remain enrolled. So you can basically stay in school for as long as you want, get the help you need to form a solid foundation and then stand on your own two feet.

Failing that, you may be able to apply for medicaid or go straight for the disability route.

Are you in the U.S? What state? some places (Mass Health) offer a basic healthcare plan that's free to enroll if you meet basic income requirements.

Also, once you're over 25, the gov ceases looking at your parents assets for financial eligibility. With a little effort you can basically go to a full university, get a single room on campus, meal plan, for next to nothing; then you can focus on getting better.