I live in Malta, a tiny island in the Mediterranean. This should say it all. I went to the 2 Neurologists that exist here. One referred me to a psychiatrist, the other to a gastroenterologist because I mentioned digestive issues.
A rheumatologist diagnosed me with fibromyalgia/cfs and told me that he can’t help me further. I’ve been ill for twenty long, heartrending, lonely years. I’m 39 now.
If I had money I would book a consultation with Dr. Diana but I have no money. I live on €400 ($528) a month in social benefits and the cost of living here is quite high. My condition has recently taken a turn for the worse. I don’t know what to do.
Can anyone help?
Do you think you have EDS? Are they any geneticist near by? On the home page Dr. Diana has a symptom check list. Answer it and send it to doctor Diana it should help clue you in to the problems you are having. I am 37 almost 38 and I have been sick for a very long time too. You are not alone. Do you have a Facebook account because there are lots of EDS support groups. Also, google Ehlers Danlos national foundation. The web site has wonderful information and a forum as well. It has info on completing a Beighton test. Also, are other members of your family suffering from the same symptoms as you? For example in my family my grandparents, my mom, her siblings, myself, and my kids all have EDS. I was the first one diagnosed because I have a severe form of it. The severity of EDS can range from on person to another, but the form/type runs true in among family members. You mentioned you saw a neurologist . What symptoms are you having? EDSers tend to have a external communicating hydrocephalous and can also have a Chiari I malformation. Unfortunately, the doctor has to be well-versed in EDS to pick up on the hydrocephalus and the Chiari I malformation. Have you seen a cardiologist? A cardiologist is important because in EDS, regardless of type, we are all at risk for vascular rupture. It is important to have yearly echoes to monitor the diameter of out aortic root. Plus EDSers are at risk for LVDD, POTTS, mitrial valve prolapse, etc… Do you have dysautonomia too? I know how isolating and overwhelming this disease is. Hang in there. You are not alone. Even on your little island there are others with EDS there too. Maybe you can be the one to start a support group there for EDSers.