Mito is a desert., why?

Syd, I'm sorry you've had bad experiences with doctors. For me I think the key has been finding a couple "oasis" in the desert. For instance since I don't know anyone close geographically who has mito I enjoy connecting with people online. Along with this site there is a Yahoo! group called mitoldies, a facebook group called mito adults, and a google group that just started. I also enjoy keeping up with a few websites that people with mito have posted links to on this site. The next thing to realize is that not all doctors are the same. Some will think your crazy and waste your energy for nothing, but it is possible to find doctors who are at least willing to learn about mito. My primary doctor is learning about mito with me, but she is very helpful because she will talk to all my specialists, she keeps reading, and she thinks about my health and quality of life even after I leave her office. She even pays attention to how much energy she is demanding of me at an appointment. Maybe you could try calling or emailing different doctors and explaining that you have mitochondrial disease and you are looking for an office where they either already know about it or are willing to take the time to learn. If you get a yes then send them the link to the physicians guide that's on this site. Sorry this response is so wordy! Mainly I just want to tell you to not give and I'm really glad you decided to bring up mito long enough to write your post! Hang in there!

Hi Syd, I can totaly relate, it's been a 5 year, 28 doctor process for me. In the end I was the one asking the doctors to run this test or that test. It's sad that we have to be the ones to look online for answers and new treatments and tests. I wish you luck in finding a doctor to help you.

Syd,sorry you've had to find us ... but glad you reached out to tell us of your frustrations and feeling. I was suddenly ill in 2002 ... didn't get my formal diagnosis until 2006 ... so there are deserts and oasis along the way ... and you've found a place where people understand what your experiencing. I live in Northwest lower Michigan and travel 8 hours for my Mito support. However, I have a very good PCP that can coordinate things over the phone and other specialist in my local area too that help. I have no answers as to physicians in the North West. Keep posting an you'll find someone with some idea. Definitely rely on the physician's guide on this site it is PRICELESS! I don't use the forum often enough as I don't have access to high-speed internet where I live ... you can reach me by email: whelmka@mac.com Wendy Helmka, COX Defect Complex IV with others in complex I, II,III ... with Profound Leukodystrophy