So I saw the cardiologist yesterday and he did all of the tests, reviewed my ultrasounds and x-rays from the last 2 yrs and went over my medical history with a fine toothed comb and finally came up with the answer to all of my problems.
I have D'Heller's-Danlos syndrom, which I have known about for 10+/- yrs...apparently it is at the heart of all of the problems.
He read the "real" medical description of the disease and even printed me a copy:
1. severe and debilitating fatigue
2. shortness of breath irregardless of the intensity or length of the effort (what??? Now they tell me!)
3. severe and debilitating nuro-muscular pain (!!!!!)
4. vascular fragility
5. heart valve weakness
6. severe difficulty in healing
7. skeletal deformations
etc.....
So, after hearing what my life has been and been informed that it will only get worse as time goes by and then being told that it is a 1/1000000 disease and that I am very rare...I was told that they can do nothing about it!!!!
He was very nice about the whole thing but I felt like I got whacked with a skillet in the face. I knew about the syndrome and that it prevented my suture lines from healing etc but had no idea about the rest. Was told that my heart needs surveying but it is doing just fine and dandy and my lungs are clean and happy...but I have some extra ribs that are compressing them a bit which prevents me from taking really deep breaths.
Other than that I have to stay on anti-inflamatories as long as possible and up the muscle relaxants.
That's it folks...been told that I need to 'adjust my mindset' and get used to it. OUCH.
I am to keep up the exercise and diet but no other advice except for a regular check up and would I like to speak at a conference on severe pain? I said yes.
So now I know.
Sharon
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