Is it true you can't have a genetic test for EDS type III (hypermobility type)?
And if it's true, could a genetician still give the diagnosis?
My rheumatologist, which I see because of my CFS (NeuroEndocrineImmune Dysfunction Syndrome, more suitable name, really!) discards all my joint troubles (even those my physiatrist treats) because he puts all I have in a "CFS/FM" basket. Even though he checked me for FM and told me I didn't have it.
My physiatrist is the one who gave me the "ligamenteous hyperlaxity" diagnosis officially.
I asked him about EDS type III. He said he didn't know much about it, but agreed it was "possible". But he said something like "but I think theres no way of diagnosing it officially, and what good would it do you to have that diagnosis?" Of course I wouldn't get better treatments, but it could help with recognition and other types of help.
I'm sure EDS type III is what I have, I've done lots of research, already have hypermobility diagnosis and fit the diagnosis criteria. Also, the more I look into it and learn about it, the more I see family history, altough no one has had as much trouble/injuries as I have, luckily for them!
If there could be a test done, I would ask for a genetician consultation the next time I see my GP. But if theres nothing to do, I don't think my GP would feel knowledgeable enough on the subject to give me the diagnosis, and if neither a physiatrist nor a rheumatologist are, who would?
Thank you very much!!!