Hello, @looking for advice, this is Mamacita, from the Adults on the Autism Spectrum discussion site. I have been re covering from a Fibro flare, which had followed two bouts of Shingles and cellulitis. I apologise for not getting with you sooner. I just checked my emails today, and earlier we were on the road.
I feel so bad for you! I totally get the difficulty you have been having with all your various doctors and nurses. It has taken me forever and a day to even halfway understand how to get along with the staff and the doctors.
I have ADHD and Autism, myself. When talking to any of the people involved in my care, I try hard to word things in a way that I convey the facts as simply as possible. For years, I wouldn't tell everything, out of embarrassment. But now, I tell it all, so that they can make the best diagnosis they possibly can.
It sounds like you have been very thorough and provided them with every thing they need to better understand your symptoms. Unfortunately, it does sound to me like they are not taking your case as seriously as they ought to. This has been my experience whenever an illness involves a level of pain. Pain is so subjective, and easy for medical practitioners to dismiss if they believe a patient is just wanting pills.
Is there someone you could take with you when you see the doctor? Many times I ask my spouse to accompany me. I have also been with a friend who has spina bifida among many other challenges. She would have back to back appointments at a University Medical Center. She always said she felt like she got better treatment with me along, because having me was like having a witness.
There are some doctors, unfortunately, who simply do not want to be bothered with complicated patients. I am one of those patients. I have recently "fired" my arthritis specialist for this very reason.
You have every right to be treated with respect and in a timely manner. When you are in severe pain, it should not take a week to be seen. I am not a medical practitioner and I really don't give advice. But having said that, I wonder if you could see some doctors at a University Medical Center? I understand that is an option that many folks make under similar circumstances. Convenience in location is important. But not if you are not getting the help you need.
Please let us know how you are doing. I have to get off here now but I want to check back with you later to see how you are doing. Can we meet up again soon?