Well, I guess count me in. I was tentatively diagnosed on Thursday with hypermobility syndrome, probably EDS but my doctor would rather let a geneticist make that call. I can see the geneticist in January or February, but in the meantime I've been sent on to rheumatology for out of control knee pain, and my appointment just got bumped up to Aug 6 because of a cancellation, so I'm feeling rushed to get the forms all filled out. I think I figured out the rest, but I don't know how to fill in the part that says, "Describe briefly your present symptoms." All I can think to write is "my knees hurt, and they bend weird" which does describe it, and it is brief, but I don't think it would be very useful information. Any idea what kind of information they're looking for?

Welcome Geneva, it sounds like we are about in the exact same place. I was given the tentative hypermobility syndrome diagnosis on Friday, with a possible EDS diagnosis. I haven't been referred to a geneticist yet, but I am following up with a rheumy on the 14th for further assessment, and to offer some thoughts on my knee, ankle, foot, toe pain problems.

I don't know if I really have an answer to your question. Myself, I would probably just write down what you have already stated, and when you are examined, at least the doc would know where to start looking. Don't know if that helps.

Let us know how the appointment goes on Wednesday.

Welcome!

Kudos on getting an earlier appointment, but sorry you are rushing now. I always forget to write things down on those sheets!

I would be sure to write down how often pain occurs and how severe the pain is. And if you are like a lot of us EDS types you may have a high pain tolerance, so it can be tricky to relate to the normal severity scale. (When I broke my arm I just thought it was a mild sprain from my pain level-- oops).

It might be helpful to write out your symptoms - or least joint ones - on a separate piece of paper also.

For me handing the doctor a piece of paper with my main concerns is very helpful. That way I don't forget important stuff (and it helps them, too).

Good luck and, again, welcome!

Liz

PS Feel free to post on the new members forum to let everyone know you are here. Some very supportive spoonies are mostly in other forums and might not see that you are new.

PPS I think there might be a helpful sticky in the doctors and hospital section about this sort of thing, too.

You need to describe not only the symptom you are there for - Sore Knee- but everything that you are suffering... maybe something a bit like this (depending on what your personal symptoms are and from what I have read in your post etc)...

"Describe briefly your present symptoms." Severe knee pain and giving way episodes, fatigue, lethargy, general joint pains, poor concentration, insomnia, pain (all the time), Stomach pains and upsets, IBS and GERD, Hypermobility, joint injuries, dislocations/ subluxations, Headaches and Migraines etc etc... (List anything that you have that could be related to your HMS/EDS or other medical issues - list all of the symptoms you suffer, all the times and sometimes etc)...

You need to list anything that could be related to your HMS/EDS or anyother health issues and also anything else you are suffering from at the moment (or in the last few months)...

Hope this helps...

Yes!! That's how it needed to be worded, for me to catch on! Thanks!

The appointment went surprisingly well, too... horrifyingly well, actually. I've heard nasty stories about rheum. before so wasn't expecting much, just wanted help for my knees. She wants to see me a couple more times to be sure, but is fairly confident I do not have fibromyalgia. We're running about a thousand tests to rule out autoimmune disorders. She's sending me on to physical therapy to be sure we order the right type and size of brace for my lifestyle, and the wait for that is killing me, but haste does often make waste, after all. And she wants to see my x-rays and blood work back first, but she's pretty confident I have H-EDS, and is ready to forward me on to the geneticist of my choice, as soon as we can afford the airfare.

Now, if only I could figure out if I'm supposed to be thrilled or devastated, at how quick my doctors are at agreeing with me about my EDS suspicion.

glad to hear it went so well. I see my rheumy on the 14th, so I will use your success as my inspiration.

Yeah! I'm glad you had such a productive appointment. If I had any patience myself I'd loan you some while you wait for the brace. I think you've got a great attitude about the delay.

Smiles,

Liz

Glad I could help (it can be daunting when you get a question like you were asked and you have no idea what should be added), glad that my list of what I would write was a help to you...

Also getting the Diagnosis is a good thing at least it means you finally have a name and a reason why everything is happeneing to your body and can finally get the management options set in place...

"thrilled or devastated"
we all go through this!! hugs!

but I'd say... try to be thrilled!
much better to know quickly, than spending years being told "we cant find anything wrong with you"
and be impressed and proud of yourself that you have helped immensely to get dxed so quickly!!!!!
your rheumy sounds great!
good luck and welcome on the rollercoaster!
xxg

Welcome to the gumby girls & bendy boys club. Sounds like a good appt.