I've been reading some of the posts and decided to share. For the last 2 years I've been trying to get a diagnosis. My partner did research and brought up to my general practitioner the possibility of scleroderma due to my symptoms. My general practitioner agreed and then the battle of a diagnosis began. My symptoms began with tachycardia and Raynauds syndrome about 10 years ago. The heart condition escalated to the need of a pacemaker 2 years ago. At which point I began to develop esophageal and motility issues.
Over the last year I have developed stiff, swollen fingers and my ring size has increased. I have been diagnosed with REM Syndrome and Telangiectasias. I have been to many specialists and until this past Monday I have been told there was not enough evidence because my labs were normal. I recently moved to Charleston SC and found a terrific team of doctors. I was diagnosed with limited systemic scleroderma.I no longer feel like I am crazy, but I am now scared of the diagnosis.
The battle to get a diagnosis was horrific. I traveled from Boston to Philadelphia seeing specialists in Cardiology, Gastroenterology, Rheumatology, Dermatology, and Electrophysiology and none were willing to see outside their little box failing to make a commitment to the total picture. I finally found a Cardiologist that used to be a Rheumatologist and made all the referrals to the appropriate doctors in conjunction with my Internist.
This is for all the people who are having trouble with their physicians. Please don"t give up and make sure you get other opinions.