Symptoms of Degos Disease
Sat, 2011-05-14 15:14
Hi Everyone, I am 44 year old caucasian female.
I have been to every Dr.as I was first diagnosed in 2004 with the disease. I have six leisons on my back and upper arm, which are now just scares. I also went to John Hopkins, in Baltimore, MD, (US) a Determinologist for the Degos’ disease and he took one look at me and the old scars and told me if I had DD I would be dead by now. I don’t know if I should just go off of what John Hopkins, Dr. Grant Anhalt said by just a visual review on my back.
Other symptoms: I have had MRI’s, MRA’s, etc that show that my right middle Cerebral Artery in by brian was arrowing. So I went to Jefferson University in PA, USA to have an angiogram done on my brian. The Nerosurgeon was very concerned about putting stints in the artery since my platlet count drops down ot 44,000-88,000 thousand and didn’t think the stints would hold. We did the procedure anyway and he said that everything looked good and that my artery must have a had a spasm. ??? And I am a little nervous of how an artery in your brian just has a spasm.
I had a colonoscopy done last week and all was good except for a polp, a couple of hemirodes and a slight bought of diverticulitis.
MyHematologist, Jack Goldberg Univ. of PA recommended me to a specialized Rhemotologist Doctor at the Univ. of PA, because he believes that I have an some type of autoimmne disease. That appt is scheduled for May 20th. I now have another appt. with another Advanced Gastro Dr.on June 21 and the nurse just read off that I have chronic hepatitis. Besides the dizziness, blurred vision, that I get everyother week, plus body shocks, arteries narrowing and the consitant exhaustion….is anyone else experiencing any of this? Sorry for the misspelling and if any can tell me if they have any of these symptoms, please share. I am so frustrated. Thank you! Cindy
Sat, 2011-05-14 16:49#1
Hi Cynthia So sorry to know
So sorry to know you have been having a bad time. Since you’ve been diagnosed with Degos disease since 2004 it looks like you have the benign version. It is when you have internal involvement that Degos disease can be very serious indeed. If you direct your doctors to the various sources of information on this website and also ask them to contact the doctors listed, they can talk to each other about symptoms etc. Degos disease is not an autoimmune disease, by the way. It’s only by having a skin biopsy that the doctors can truly diagnose Degos disease. There are slides on this site which show exactly what the dermatologists should look for.
In the meantime, look after yourself and try to relax……it’s good for your immune system!
Please keep in touch.
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