By Beth Jones on Monday, September 01, 2003 - 02:05 pm:

I was told by a friend on an RSD forum that I should look into this. I had never heard of EDS, but have the following abilities:

can bend fingers back more than 90 degrees, double-jointed at hips, can subluxate elbows and knees, can raise big toes. Can easily bend over and put palms flat on floor. What has me a little more than curious is the fact I have developed thoracic scoliosis as an adult and have severe osteoporosis, I am only 41 and still have menstrual periods. The other factor is on my maternal side an uncle and my grandpa died of aortic aneurisms and my aunt is known to have a brain aneurism that is not operable. I do not really have joint pain, other than years ago as a teen my knees ached dreadfully when it rained. I healed fine from a c-section, don't know that I bruise more easily, but do have fair skin and can easily see veins on my chest and forearms.

I don't know what to think, as I have recently been dx'd with thoracic outlet syndrome and RSD hate to bring up another rare syndrome to my Dr, might send him around the bend! What do you think?

Beth

By Az on Tuesday, September 02, 2003 - 01:12 am:

I say drive your doctor round the bend. the least he can do is rule the serious side of EDS out. The thing with EDS is there are so many types and one can have similar symptoms to the other, so its best to have a full diagnosis from a rhuematologist.
Good luck
Az

By Beth Jones on Thursday, September 25, 2003 - 12:08 am:

Az,

Do you think that what I have described raises enough questions to get this possibility checked out? I have been through the wringer to get the TOS and RSD dx'd, so wd like to know if you feel what I described COULD be hypermobility or EDS before I agitate my Dr further.
Thanks,
Beth

By Jean on Wednesday, September 22, 2004 - 01:49 pm:

Have you been checked for hyperparathyroidism? Ask MD for calcium and PTH level.

By Michelle Castle on Sunday, September 26, 2004 - 05:18 pm:

Beth,
I definitely think what you've described is consistent with a connective tissue disorder. I think you should look into it.

You can see the diagnostic criteria for HMS at http://www.hypermobility.org/diagnosis.php. The diagnostic criteria for EDS depends on the type of EDS present; you can read the criteria at http://www.ednf.org/nosology.html. Both organizations have pamphlets available that you download or order, then give to your doctor.

Michelle