Monday, September 20, 2010

More Clues

Today I saw Dr. Schmidt. I won't tell you why. Let's just say it happens once a year. And like I joked with her, "Shouldn't I be seeing a spelunker?" Anyhoo.

She gave me further validation that a diagnosis from Mayo is crucial and attainable. It made me feel so much better to have yet another doc on board with this plan which is daily falling into place in what can only be seen as God doing His thing. Every day I hear stories from the most random sources about Mayo Clinic success stories. Today Dr. S told me about how much I remind her of another patient of hers who suffers from many of the same symptoms: hyperflexibility, joint/loose tissues, eye problems from loose tissues, etc. This person has "Ehlers-Danlos Syndrome" which is a connective tissue disorder. There are several types of this. Ehlers-Danlos Syndrome
So we are going to cut Wikipedia some slack here. I could have chosen a different site to cite from, but I felt this was the most presentable.
I am not self-diagnosing here, but I do think we are on to something.

Since the injection, I've noticed about a 2% improvement in pain levels decreasing. Not much. I'm still unable to put weight on my leg. Oh and that steroid injection was kind of the pits. I mean, I was thankful to be able to have it done. But I felt gnarly afterwards. It actually intensified the pain for a day.

I go to Baylor Eye Clinic tomorrow for another look at the right eye which has been giving me a little trouble lately. Whatevs. Just another Tuesday.

OH and something I found to be very interesting. I have a theory. I had a very bad case of endometriosis and have to have a full hysterectomy at 26. Thankfully, we had Leelah prior- praise the Lord! Endo is basically tissue that is running rampant in the body. So I think this is connected. I asked Dr. Schmidt who performed my hyst if she thinks this is connected too. She thought it was very funny that I should ask since the girl that she was comparing me to that has EDS had the EXACT same surgeries and type of endo that I had at about the same age. VERY interesting.

For those of you out there living in chronic pain and being undiagnosed, please know something. I had a close friend tell me this encouraging word the other day, "You are not crazy, you are undiagnosed." It just made me feel so much better. So I thought I would pass it on to you. May the Lord bless you with peace that transcends all understanding.

1 comment:

The Box Office said...

I LOVE Dr.S - she's wonderful!