It seems a little quiet around here, so I thought it may be time to make a new topic. Is anyone new around here?
I just joined this week. I was diagnosed, clinically, with EDS in May 2017. I have a laundry list of other diagnoses as well, along with autonomic dysfunction being a key player also.
I don’t know what type of EDS I have. We got referred to pediatric genetics, but everyone in the entire state currently has a 1 1/2 to 2 year wait list. One of my other doctors was able to get in touch with the specific specialist that they want me to see and he said that in the interim we could try to get the first phase of genetic testing done. So right now we’re waiting on a prior authorization from insurance for the chromosomal microarray analysis. My neurologist for the autonomic issues is actually the one who diagnosed the EDS. He thinks that I also have a mitochondrial disease.
It’s all so complicated. It seems like we are peeling back layers and each one gives fewer answers and more questions. Frustrated for sure.
I’m 33 and have been unable to work since I was 29. On top of having to accept new medical problems, I’m also having to grieve the loss of my old life and figure out how to adapt to the ever evolving “new-normal”. It’s really hard.