Doctor recommended genetic testing
Hello, this is my first time in this community and I am glad to have found it. Recently I went to see a specialist for my on-going joint aches and other symptoms, as a recommendation, and after that first appointment they suggested I get genetic testing since its likely I have Classic EDS or classic like. For context, I am F31 and living in Europe, have been diagnosed with Autism and ADHD in the last 3 years and only now have I actually looked into all of my physical health issues from digestive, low blood pressure, aches and pains, constant respiratory infections, eczema yadda yadda... Basically everything I thought was "oh its fine, I just need to do xyz" someone has been reminding me how "noooo. You shouldn't be in so much pain and discomfort"
But, the genetic testing aint cheap. Its half my savings, and public healthcare isn't helping (no advice, please). I am willing to do it if it means having answers... But what if I go through it and get no results?
On the beighton scale I have a 4 (some joints he was unsure, so he only counted the two pinkys and knees), so I don't qualify for hEDS and also my symptoms are more than that. My skin isn't stretchy but I guess its velvet soft? People always complimented on it, despite getting scratched and bruises easily, and get rashes pretty easily too.
I had read about Ehlers Danlos but never considered it because I am not that hypermobile, still when I first read about it (after Autism/ADHD diagnosis, came across some info) made so much sense about my ankle/knee situation that hurt on and off, and why a ligature/brace would help during worst days.
I just feel so torn. Can't find almost anything on other type besides hypermobile, especially on my mother tongue, and feel so alone. Trying to figure out my finances to see if I can get the testing, especially since the last year my fatigue has gotten worse. Last year had a little cardiac scare that doctors didn't take seriously, and when this doctors mentioned ALL of it could be connected... I felt both relief and hurt. Relief because I felt I was going nuts anytime I told someone or a doctor "I think all my main symptoms are connected" or when I was told "it was just stress". I stopped going to doctors all together because even as a kid: no one cared. Twisted an ankle, but you can walk tomorrow even if funny? Then that's fine. Can't walk? Well... Have some anti-inflamatories and sit down, we ain't going to waste 5 hours in a hospital for it.
I know not everything will be this and I don't feel like going into depth on everything but... i just needed to vent. I have been going back on forth on this for 2 weeks. I know I should just get the testing if they suggested it and gave me order (I don't know the name in english, but prescription I guess?) but part of me is so scared. I tried talking to my dad about it, he also has some of the same complaints, but he brushed it off as "our family has no problems, you just need to exercise more".
If anyone read all this, thank you so much. If you relate and want to share something, feel free. Have a great day everyone