Hello all,

I realize it's been years since I posted this or there was last activity on it, but I figured I could post an update just in case any Googlers out there find this post and wonder what ever happened to me.

In mid-2019, I was finally diagnosed with Ehlers Danlos - Hypermobile type by a rheumatologist after my PCP suspected it and referred me to her. This diagnosis still doesn't cover all of my symptoms, even now, but by the point that I had finally gotten this diagnosis, I was ready to stop looking for a while... As I'm sure you all know, going to appointment after appointment and getting test after test is truly exhausting, and I just wanted to rest once I finally had an answer that covered at least a good portion of my symptoms. It isn't treatable, really, but just having that answer was massively helpful.

I was also referred for autonomic testing at some point, and it was found that I had symptoms of 'borderline' POTS-- i.e., I hadn't *quite* met diagnostic criteria, but I clearly did have documented symptoms of it. One of my doctors put me on a medication for this (fludrocortisone), and it has been my personal #1 improvement to daily quality of life. I still feel sick basically every day, but my level of functioning has been brought to a point where I can at least do daily household tasks without much issue most of the time, which is better-off than I used to be.

I happened to go back to this same clinic for migraine treatment recently and they had me do another round of autonomic testing just to see if anything had changed, and I am still waiting on the full results, but I asked the technician about them as she was doing the test and it sounds like I actually did meet the diagnostic criteria this time around. I don't think anything regarding my care will change anyway, but it's interesting to see that after a couple years of being medicated for it, my symptoms (off of medication for 24 hrs) have actually gotten a little worse anyway.

The functional movement disorder did eventually clear up with physical therapy! So I guess that goes to show that even when we're annoyed and frustrated, treatment can still work hahaha

I got on disability, too, in late 2021 on my second round of appeals. That, along with receiving gov't healthcare and food stamps, has been life-changing for me. Knowing I can go to doctor's appointments without worrying about how I'm going to pay for yet another specialist has been massively helpful for both my mental and physical health.

Anyway, the final thing I have yet to check off my list of things I suspect I have but still haven't been able to get anyone to listen to me about is a CSF leak. I first suspected this very soon after I was diagnosed with Ehlers Danlos and was almost shocked to see how many symptoms I had of it and also that a spontaneous leak is much more likely to happen in Ehlers Danlos patients, but when I brought a print-out of the Mayo Clinic's CSF leak symptoms page to my PCP with all the symptoms I had highlighted, she basically told me in a gentle voice that yeah, maybe I had this, but it was really hard to get diagnosed and treated and she just wasn't sure where to even begin so it wasn't happening with her help-- that was back in 2019.

However! I finally got around to saying "hey, you know what, I'm going to try the Mayo Clinic one last time" and I self-referred to the neurology department in August 2022 stating the reasons I believed I should be assessed for this issue, and after six more months, I actually got offered an appointment. So! That's the reason I'm back here on Connect in the first place, I am doing research on what to expect and etc etc but I am finally, after over 5 years, about to check off the last thing I'd been wanting to get assessed for but couldn't get anyone to listen to me about until now.

I am honestly absolutely ecstatic! I literally couldn't believe it when I was told I was being offered an appointment, it felt like winning the lottery because I knew nobody else would take me seriously if even the Mayo Clinic wasn't willing to assess me for this complicated condition, so to hear that they're willing to look into it for me is the best news I've had in ages.

I am hoping that if anyone even reads this post, this update will serve as a sign that life keeps moving and you'll keep living and that even if things are hard, there are still bright spots in your future. It's easy to get bogged down in frustration and despair, but things will look up from time to time too, and those times are worth fighting for.

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