By Silvia on Wednesday, September 19, 2001 - 04:47 pm:

Hi,

I just saw a Genetecist yesterday for the first time. I was referred to him because I was diagnosed with Hypermobility. Basically I wanted to find out if I had EDS and if so what type. Prior to seeing him I really thought I had type 3 because of the hypermobility and chronic pain. However, after seeing him he said he really couldn't classify me into a particular EDS type. He said that even though some of my joints are hypermobile, the points according to the Beighton scale didn't add up to diagnose me with type 3.

He did admit that I do seem to have some type of connective tissue disorder. Especially since I was born with a dislocated hip, have scoliosis, a leg length discrepancy, chronic pain, and have also had unexplained bruises. He has suggested I get an echocardiogram and a thorough eye exam as well.

I also asked him why some people with EDS experience chronic pain while others don't. He said they see hundreds of patients and that many of them lead normal pain free lives while others suffer from pain. But he said he didn't know why this was the case. He even told me he has seen patients who were much more hypermobile than I am and don't suffer in pain.

Anyway, he said he thought my hypermobility was "mild"... then why am I in so much pain! Have any of you ever had a hard time getting diagnosed as well? I just wish I knew what's wrong with me.

By phil on Wednesday, September 19, 2001 - 06:12 pm:

Hi Silvia
It seems that just about all of us, EDS, 'hypermobile', whatever we are, have problems trying to get an accurate diagnosis. We also have difficulty in convincing so-called 'specialists' just how severe the pain can be sometimes. Hang in there.
I urge you to try to get a copy of the Editorials which were published recently in a medical journal called 'Rheumatology'.
Rheumatology 2001;40:485-491

In the same journal, Rheumatology 2001;40:559-562
you will find a survey by Prof Grahame and Prof Bird. This clearly shows that there is confusion within the medical profession regarding the hypermobility syndrome.

The above papers can be useful material to help us to establish our status with our doctors.

By Silvia on Friday, September 21, 2001 - 04:23 am:

Phil,

Thanks for posting a response to my message. I appreciate the information regarding the medical journal and will try and find that article.

Like you said, it does seem hard to convince Doctors of how bad the pain is. Especially since MRIs, CT Scans, and X-rays don't aid in diagnosing hypermobility and pain. I've had all these tests done and they all come back normal. Except for the scoliosis and mild degenerative disc disease, but even with this the doctors say it's not that bad to be causing so much pain.

I'm currently getting Prolotherapy at it really has helped a lot. I'm still in chronic pain but it's not as awful as it was before.

By Mei on Saturday, September 22, 2001 - 12:55 am:

Phil, is that the May 2001 issue of Rheumatology? I have read that one. Or should I still be looking for more...

By Phil on Sunday, September 23, 2001 - 06:45 am:

Hello Mei
Yes it was the May 2001 issue, but I suggest we all keep looking for further reliable information and posting it. We can try to help each other.
Best wishes, Phil.

By Mei on Sunday, September 23, 2001 - 07:25 am:

Thanks anyway!