slight medical update (positive)

jaythejester · 27-11-2023, 02:32 AM

I've mentioned before that I have Ehlers Danlos syndrome (eds), specifically hypermobile eds. A while ago I went to a doctor about my chronic migraines and mentioned that several people I know with Heds (some of whom are related to me) said that they think I have it, and that it would make sense with a lot of my symptoms. she did a genetic test (cheek swab) and the results of it came back negative. she said she expected them to come back negative as she believed I have Heds, which doesn't show up on any genetic testing because the range of genes is too wide. she couldn't technically diagnose me with Heds, but she did confirm that I do have all the symptoms and I'm not just overly worried. I talked to a friend of mine with eds, and he said pretty much the same thing, I'd probably have to see a PT or some other kind of specialist for an official diagnosis based on symptoms. I am starting to have some concrete answers finally!

in terms of migraines, things looked okay for a while and then just went back to how they were before. they prescribed me some meds for my migraines, but they basically forced burnout on me. we haven't been able to get a second appointment to try and change the meds, so I'm on my own for migraines again until I can get back into the neurologist. my old migraine meds were also stupidly expensive.

Auror. · 27-11-2023, 09:45 PM

not trying to be rude - but honestly unsure what you are wanting from posting this? we can't offer medical advice. and if you're after support then you're better off posting in one of the support boards, and maybe trying to be a bit more specific as what type of replies or support you are after.

don't forget there's also the rv forum where you can vent and post whatever you want if you're not really looking for replies too.

jaythejester · 28-11-2023, 04:18 AM

I wanted to share my happiness and relief that I finally have answers. I wasn't sure where to put it, I apologize if I put it in the wrong place. is there a way to move threads?

Auror. · 28-11-2023, 04:51 AM

ah okay. we thought you were potentially asking for advice so misunderstood what you were looking for. a mod can move threads if you think it should be moved. honestly unsure if this would be the correct forum for that or not! not really a common thing to post about these days.

Indigo. · 07-12-2023, 12:35 AM

I also have hEDS! It's great to have confirmation from a doctor with these things, and having that on your file could be useful in the future, if you want a referral for a formal diagnosis for example. I hope you can get in to see neuro for your migraines soon.

Re: what Camden said about where to post, I think it's just that this board is usually for like, asking for advice. Perhaps posts where you just want to share something can go in General Chat, if that makes sense?

jaythejester · 07-12-2023, 03:08 PM

this was originally posted to general chat, but was moved here cause i wasn't sure where to put it originally. also yes it's in my file (even though i don't have an official diagnosis from a professional, my gp said i have every symptom that his other patient with hypermobile eds has) so that's good i think!