NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › Skin › RED HANDS + SORE ORGANS = SYSTEMIC MASTOCYTOSIS? › Reply To: RED HANDS + SORE ORGANS = SYSTEMIC MASTOCYTOSIS?
Hi Dr. Diana. Yes, other things do happen, but not every time. Once in a while my hands just look red, but most of the time I have severe symptoms that coincide with the red hands. I also do have red toes when this happens. Same sort of thing. My symptoms that usually accompany the red hands are: red toes, red hands and toes are hot, extremely distended veins over entire body, shortness of breath, usually POTS, headache, pressure and head, dizziness, sometimes nausea. Because the red hands were so prominent, I didn’t really notice anything else, but now that I am looking… it is mild, but it is there-my face and neck are a little bit red. Also, when all of these symptoms accompany the red hands, the red hands look more like a rash. However this is not the same rash that splits my skin open. that rash is different and painful. Also, the skin on the tops of my feet is tight and not stretchy, just like the skin on the back of my hands.
I will bring pics for my doctor and a list of testing I would like to have.
As for dermatomyositis, my doctors office really screwed up and it’s not the first time. I called the rheumatologist myself to find out why I haven’t heard from them yet. Two months ago they sent a letter to my doctor saying that he could not take the referral because he does not know anything about EDS. In this letter, he also suggested to my doctor to send me to a dermatologist and a Respirologist. So, I have waited two months to see a rheumatologist that I’m not going to see, and now my doctor doesn’t want me to see a rheumatologist she wants me to see a dermatologist because of the letter!