Well, I finally saw my rheumatologist.
Apparently, he tested me for dermatomyositis in 2011, which obviously I tested negative for. I believe he said he tested me for sclerosis and commented that it’s possible but chances are slim that could’ve developed it between 2011 and now. He believes the skin issues on my hands [also tops of feet] are vascular in cause.
This was the most amazing appointment I have ever had. He has some knowledge of EDS, he did not rush, he went over all of my test results from everything, he is sending me for ultrasound testing of some veins and carotid and he is recommending to my doctor to get an angiogram of my brain and heart. He wants copies of everything past and future, from everyone including the electrophysiologist regarding tilt table testing, etc.
He thinks I need to focus on what could kill me-like aneurysms. He also said I do not have vasculitis, but I do have vasculopathy. He said the walls of my veins are weak.
He is recommending to my doctor for me to go back and speak with the geneticist. Although they ruled out vascular EDS at that time, I was not showing symptoms but now I feel that I may be showing signs of vascular EDS - veins on surface of skin. He wants the geneticist to recommend specialists and testing as well, although I do not know if that is their role - he said its hard to find people knowledgeable about EDS, so the geneticist must have some knowledge.
In a nutshell, this rheumatologist is trying to make sure that I get in to see all of the specialists I need to see and get all of the testing that I need. Is there anything else that I should be tested for or any other specialists that I should see? I am sure this guy will get me in for the testing…
I am so grateful [After being treated like a hypochondriac for 20 years] that I have now been diagnosed with several things including VVS, increased intrinsic heart rate, EDS and POTS (once the electrophysiologist gets the letter from the cardiac rehab clinic documenting POTS) and I will now be getting the testing that I need. IT IS NICE TO BE TAKEN SERIOUSLY FOR A CHANGE!