I was diagnosed with Mitochondrial Dysfunction about 6 years ago. It is characterized by extreme exhaustion, pain all over, and in my case, an inability to lose weight. I even had a gastric bypass and it didn’t help.
The week of Thanksgiving my doctor passed away. I have been researching potential doctors to no avail. What I found was that doctors are listed as allergy and immunology specialists but only deal with allergies. I have called the doctors and facilities in New York. Unfortunately, none of them could help me.
I recently found the Children’s Hospital of Philadelphia, Pa. I called three times. The first two were recorded information that went faster than I could write. The third call I spoke with a nurse. She took my information and said it would have to go through the administrator. A month later and still no reply or response of any kind. They have an adult facility that deals with mitochondrial diseases that is a separate building.
Today, I pulled up the site on my computer and found an email that goes to counselors at the Children’s Hospital of Philadelphia. I wrote an email and hope to hear back. Since it is late already I will call tomorrow…so…wish me luck.
At this point it has been 6 months without a doctor/specialist for this. I question the supplements I take and wonder if there are other treatments that might work better. My hopes are high. This is so stressful and being ignored is upsetting. If I can help it, I plan to be successful in my search.