31 March 2008
I am going to put a bunch of links on here
Through all the different things going on with K, the more I am seeing myself. Mom and I have said that one day we were going to find a diagnosis that wrapped all of our other issues into a nice little package… and I think we found it. The thing is, we don’t have all of it… none of us do. But I sure do have a lot of it. I am going to use this post as a reference… (and Ken, i know that me looking all this stuff up frustrates you, but I do believe Knowledge is Power… and the more I know, the more I can make sure that K is getting the best treatment she can possibly get).
Wikipedia - Ehlers-Danlos
The Brighton ScoreI know he gets mad at me looking at this stuff, but it explains so much. According to this scoring system, I have 1 major and 3 minors, which confirms hypermobility.
This is the ED site that talks about how a halter Monitor doesn’t usually pick up anything… this would be me And my sister!
Ken is convinced that I could look up anything and find out that I have the same symptoms. The true test would be what a doctor says.Oh, and I am going to make a list of the different things I have had that are also apprearing to be part of this…
I know that is driving Ken crazy as well, but this is a place I can track things that aren’t necessarily on my med sheet I take to the doctors, example:
- I had Costochondritis in my 20’s… something I don’t always remember.
- Thoracic outlet Syndrome
- TMJ or should we say TMD I have had this for as long as I can remember. The dentist will use a bite block for me now so I don’t have the problems when I have to hold my mouth open so long.
- Planter faciitis (it was diagnosed when we lived in Cheyenne, so that was only a 6 month period of time for me to narrow it down too… it was 1990.
Man, I remember I was just out of high school, my friends were trying to teach me how to serve a volleyball overhand, and I woke up crying the next day. The doctor said I had bursitis and to this day, if you touch my shoulder in the right spot, you can send me right through the roof!
- My ‘tennis elbow’ or as I am finding it is called Cubital Tunnel Syndrome basically it is carpal tunnel of the elbow. But the Thoracic Outlet is also a compression issue.
- Joints making clicking noises. Man, I do that every time I bend or turn weird.
Knowledge is Power and God is in control!!
And what is really cool… my Rheumatologist just called me back and he is very familiar with EDS! He asked if someone thought I had it. I said, well, actually, they think my dd has it, and the more I am reading about it, the more I see me in it… and I told her about the hypermobility… and how I have 14 of the 23 things listed as symptoms.