Let see if I can write all this down

I know this is littered with many errors....ugh my brain doesn't work well some days, but I would love anyone to correct the mistakes and give me insight on how I can make this more of a piece that can be understood. because my brain literally is doing this... I promise I won't be offended :)

I have had this dilemma brewing in my mind and I guess literately my body for a while now.

I really feel like if I would to just write it all down then maybe my brain will feel a little bit better and not so unorganized.

I guess I should start at the beginning, of where my brain started going crazy. I got a genetic report done, just for the fun of it to see where my ancestors are from. It was fun to see, but I also had the option to download my RAW DNA. I found this really cool site, that you can pretty much get all  the data that is out there about DNA. It's a research based company. The health reports that are generated from ancestry sites usually get their data from this company. So I was able to pay only 5 dollars and get a 40 page genetic report. Wow, it was a lot to sift through, since it wasn't in a easy readable format, but that is ok, I figured most of it out.

It came back with a bunch of new things for me to research! It was great! That's half sarcasm :) I got a lot of things that were heterogeneous and did the research and determined that I didn't have those conditions, but towards the end of my digging,  I came a crossed a term that I hadn't really hear of, called Elhers Danlos Syndome, or EDS. Now this wasn't a Heterogeneous or homozygous Gene for EDS it was a  "this Gene is related to a ton of people who have EDS and we haven't quite figured out the connection". So I started researching this EDS.....and the Hyper mobility EDS was me to a T!

https://ehlers-danlos.com/wp-content/uploads/hEDS-Dx-Criteria-checklist-1.pdf

Just in case you were wondering, I added the picture above explaining a bit about when I filled out the document. It isn't that pretty, but I think it gets my point across.

This is the new criteria and I according to this I qualify at being diagnosed with EDS, but the one problem is that it seems the only doctor who will diagnose me is  a geneticist, And there are only two in the state I live in and they both have year waiting lists. Even if I get in I am not sure how long it will take to get an actual diagnosis, maybe that day? but who knows.

My thinking is that I have always had EDS but it didn't effect me enough to get a diagnosis and it is super rare. And when doctors know that it is super rare, they just assume not to check for it.

So here I am doing research on this EDS when I notice that the lady who has ME/CFS (the condition I have also been diagnosed with) that made a very popular documentary, had a ton of updates on her story about what has happened after her documentary came out. She was contacted by an EDS doctor who had watched her documentary and was like "hey, that MRI of your brain was not actually normal"

https://medium.com/@jenbrea/cci-tethered-cord-series-e1e098b5edf

Here is the story, because I do a terrible job at reiterating it.

So next thing she knows, she is basically diagnosed with EDS and there are a lot of people with EDS that after a really bad viral bout get whats called Cranial Cervical Instability that caused them to have a whole slew of other symptoms including the very debilitating POTS! SO if you you have kept up on my story, you know that I was pretty dang healthy until I came down with the Epstein Barr virus about ten years ago. So my thinking, I have always had EDS, but led an active lifestyle and it didn't give me any big red flags to actually get diagnosed.  I get hit with an incredibly stupid virus, and my life is never the same. I have been diagnosed with POTS, if you were wondering. I feel like I am just connecting the dots. One of those dots, are my face tingles and bouts of face paralysis, that is a sign of  Cranial Cervical instability.

 I am adding a lot of the resources I have found of my journey, this is from a PDF about connecting the dots on EDS, POTS, and CCI. The above picture is from one of the pages, I checked everything I had. I have pretty good vision, so of course I didn't check that.

https://www.ehlers-danlos.com/pdf/2018-EDS-Webinar-Chopra.pdf

This link above is where a great resource on all things EDS, CCI, and POTS. Its crazy as I am reading through the article I just keep shaking my head in agreement.

I could keep putting article after article in about why my brain is heading in this direction.
If you read the whole story of Jennifer Brea and you know me personally I am not nearly as bad as she got.   I am not sure what my next steps are, I would love to get rid of my POTS, but it seems like it will be a long road to even see if I qualify to get my neck fused together ( if you don't understand how I jumped to neck fusion surgery, go back and read the first link I put in).  and honestly I would rather go down any other avenue to see if I can find relief from my symptoms before having to go through what Jennifer Brea had to go through, to just see if she qualified for surgery....ugh talk able rods in neck, being woke up after rods are placed, get a bunch of test done on rods, then put back under anesthesia to take rods out.......just read her story and you will know what I am talking about.