By Jennifer on Monday, April 01, 2002 - 06:35 am:

Hello. My name is Jennifer, I'm 33 years old with two young children.
I am new to all of this.
I'm sorry this is so long. I'm pretty overwhelmed.
I have only been diagnosed as hypermobile by a pt.
My joints are not extremely hypermobile, I alway thought I was just a little more flexible than other people.
I have had a bump on my elbow for about 13 years and a hemmerhoid-like bump next to my eye that came out when I gave birth to my son.. I have had joint pain for a little over two years. For the last year or so my MCP joints have been 'catching' and no one can figure out why. My back is very sore - that's why I started going to Physical Therapy.
I didn't think much about being hypermobile until I looked it up and started making a couple of connections.
I have an uncle and a cousin who both died on their 40's of possible intestinal ruptures. No one in my family has given much thought to how similar their deaths were. It happened years apart and they weren't exactly the same. Everyone thinks my uncle killed himself by drinking something nasty and that my cousin must have been a closet alcoholic. It has me really nervous. I have a brother with a hernia. Is that related?
I guess now I need to find a Dr. who has at least heard of EDS.
Are there any test to discover weaknesses in the intestines - like a MRI or ultrasound? Are there steps I can take to help prevent a rupture. What should my next steps be?
Any help would be appreciated.
Thanks!

By bree on Tuesday, April 02, 2002 - 06:21 pm:

Hi Jennifer,
I've also always felt just a bit more flexible than normal people, and felt that I'm actually less flexible now than when I was a teenager. I guess I never realised how unflexible normal people can be. I also have 'catches', and lumps and bumps (my doctors say mine are bone spurs). Plus about a zillion other symptoms... I've never heard anything about intestines. But it's hard to know what's connected to Hypermobility and what isn't. And then there are all these distinctions between hypermobility, elhers danlos, different types of elhers danlos, marfans etc., just to make it more confusing. Maybe your first step should be to find a sympathetic GP who can refer you on to the right specialists - although that's easier said than done. Have you considered going to a rheumatologist? That's where I was sent after my diagnosis. Others have told me that geneticists can help with the hereditary links in EDS, but I haven't been to one yet. It also might be worth finding out if there is a type of doctor who specialises in 'intestine problems', just in case it's separate from the hypermobility.

By Jennifer on Thursday, April 04, 2002 - 05:41 am:

Thanks for your response. It's nice to hear that someone else has catches. We have been calling it Jenniferitis because every doctor I've seen says "I have never seen that before." And then ignores it. Have your increased in intensity or changed in any way? I'm afraid I will lose the use of my hands in my old age. Mine started in my teens (Just a very little bit) and grew much worse about a year and a half ago. They seem to have leveled out for now.
I need to get myself a new doctor; the one I have now won't refer me to a rhuematologist because my ANA and sed rate and all those tests are normal.
Thanks again for your response.
Jennifer