Hi, my name is Mary, I am 38 years old and live in the Chicago area. I was diagnosed with Degos in 2002 — August to be exact. After a year of numerous medical tests and exams — I’m tired!
My medications include 325 mg of aspirin 1 x a day, 50 mg Dipyridamole 3 x’s a day, 400 mg of Trental 3 x’s a day, and 40 mg shot of Lovenox 1 x a day — that’s just for the Degos, I also have numerous allergies, asthma, and acid reflux disease (the ulcer is healed hopefully). I’m not sure how many skin leisons I have, but I do have a couple in my colon and the arteries in my gut area are narrowing. To be exact — Focal stenoses of the celiac trunk, origin of the superior mesenteric artery, and multiple hepatic artery stenosis. As well as, rectal artery stenosis. Through multiple blood tests, they have discovered that there is a problem with my platelets — they are abnormally large and sticky. I have increased sensitivity to epinephrine (marked) and ristocetin (mild) — in just, problems with coagulation.
As of today’s date I’m tired of my doctors and the lack of knowledge. I am planning on consulting the Mayo clinic in the near future.
I actually feel fine except for sinus problems and the need for sinus surgery — which the doctors don’t want me to have — (risk/benefit ratio is not in my favor). I am looking for answers that just don’t seem to be available.
Does this ring any bells with others out there?
Well, I’ve made it back from the Mayo clinic! The standard answer: “That’s a great question, I just don’t have an answer for you — but excellent question, do you have any more questions?”
One doctor even told me, when I showed him a small lesion, that he didn’t think that was one — no that’s not a lesion was his comment to his assistant! I do believe that I would know better than anyone! Anyway, not a total waste of time!
Met a neurologist who is from England! At least she got the ball rolling and ordered some tests!! The dermatologist commented that she had some valid questions and concerns! Enough questions that when he returns from vacation they will all sit down and discuss my case!
I will admit – there were some very good looking and well dressed doctors at the clinic!
I did tell them about the web site and the conference — which elicited another great response — “I don’t think that the conference will be beneficial medically — but meeting with other patients with the disease will be great!” Doctors, what do they know?
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