By Maddie on Friday, June 02, 2000 - 12:24 pm:

Hi. I am 21 and was just diagnosed with HMS yesterday......This is weird, but it ALMOST feels like a relief. It is, as if, all my aches and pains and sprains are
actually VALID now :o)

My rheumatologist really dismissed the idea of EDS, although my regular doctor thought it might be a possibility. Has this happened to anyone, who later found out
that they DID have EDS? Do you think one 20 min (or so) office visit can totally rule out EDS?

I would like to talk to anyone about this.

Thanks
Maddie

By Lucy on Friday, June 02, 2000 - 12:24 pm:

Maddie:

It took me 10 years to get a proper diagnosis. I was originally diagnosed with Hypermobility and then (after doctor after doctor ...) I finally was TESTED for EDS.
In order to be properly diagnosed for EDS you need to see a geneticist. A 20 minute doctors visit CANNOT tell you if you have it or not. Take care - Lucy

By Jonathan B on Friday, June 02, 2000 - 12:26 pm:

Hi
I'm glad to hear of your relief,I felt the same way when I was diagnosed with HMS.
I would however recommend looking further into the related problems.I am told that EDS can be easy to spot but like anything else it's better to be certain(I was 28
before I managed to be diagnosed properly)
I would go back to your doc and see what else can be done to be ABSOLUTELY certain it couldn't hurt and you would be sure then.
Jonathan B

By Greg on Friday, June 02, 2000 - 12:26 pm:

Maddie,

I'm 19 yesrs old an was told by the rheumatologist for four years that it was just my muscle tone problem. I went to a specialist on DEC. 20, 1999, who diagnosed
me without even touching me ! Of course afterward he saw all my ranges of motion. But yeah, it's a hell of a relief to have a great doc who actually LISTENS
instead of dismissing you.

Greg

By Kim on Friday, June 02, 2000 - 12:30 pm:

Greg,

Who was that doctor??? I haven't found any here that know what the bigger problem is... they just focus on my knee, or my shoulder, or my back, or my ankles, or
whatever the current issue is. I want someone to focus on the BIG picture. Does that make sense?

Kim

By jane grant on Sunday, October 01, 2000 - 06:27 am:

Yes Kim that does make sense I am the same & keep seeing so many different drs for different things & they dont talk to each other. Are you in UK? If so visit www.hypermobility.org for a list of specialist UK clinics. I have asked my doc to refer me she says she will....in about 6 months judging by past performance!!! Keep smiling Jane

By Emma on Monday, October 02, 2000 - 12:07 am:

It took me 7 years too Kim, Jane. I, too am 21, and the only thing that seemed to kick my doctors into wanting to know what was wrong with me, was that, like most, I had a season ticket to the A&E dept at my local hospital. They obviously got fed up with me, (it costs your GP everytime you go there).

The last time was a year ago, since I've had a MRI scan, seen a Rheumatologist speacialist, and thankfully my GP said try the internet, I found the HMSA, (www.hypermobility.org). I took him the printed off information, dropped it in a few days before my appointment, when it came to my appointment, he said he would refer me to one of the clinics. I have now seen the man himself, Prof Grahame, and am so glad there is an answer to the supposed Hypochondria I am always meant to of had. I am not mad.

All I can suggest is visit the HMSA site, print off the information and take to your GP, it may be a wait, but to see a light at the end of the tunnel, is in itself a huge relief. I know I am not really going to get any better, and having children is going to be hard, but is something I would like to do in a few years time. But just to know that I can be in contact with others who have the same problem as me, is a cure in itself.

By Miranda on Monday, October 02, 2000 - 11:57 am:

Hi
I,ve not gone mad after all!
I,m sure that for the past four years people have not believed me when I've told them that I am in constant pain, although the severity of it alters daily.
A rheumatology consultant diagnosed me with HMS about six months ago and what a relief it is to now know that it is not a made up syndrome to fob me off with but in fact other people are aware of the difficulties I face with my mobility.
Thank you for the advice on wearing braces.