Sarcoidosis And Me
National Sarcoidosis Organization
Awareness is Key - Research is Power - Support is Everything
Joined Feb 10 2012
63 years old
55 years old and french-speaking (excuse my english) living in Montreal. Symptomatic since early 2010 at least but especially since august 2010 when I started spitting blood, took 7 months before getting a sarcoidosis diagnostic after 5 CT scans, 2 PET scans, 2 bronchoscopies, pleural punction, lung biopsies, partial lobectomy and finally a mediastinoscopy (You guys know the drill...). Official diagnostic on March 10, 2011. Now have obvious SURT (Sinus, nasal mucosa, bucal mucosa, pharynx and larynx), ears and also under investigation for Neurosarc since summer 2010; now awaiting verdict for sarc-arthritis and bone sarc (Blueish fingertips and toes, bone-bumps on fingers and distorted fingers - with pain, obviously). My case seems to be atypical in the sense that although the lung was much affected by inflammation, it does not have sarc (Lymph nodes only), this means that the pulmonologist considers that my sarc is inactive and now I am going around in circle with appointments and tests by 8 specialists, each one of them going down is own check-list of the most common (non-sarc) reason for all this inflammation - no one is looking at the big picture ! The neuro awaits the MRIs, the rheumy awaits results from lab and Rx, the sinus Dr has first tested for alergies to justify the chronic sinusitis/rhinitis; he now await the results of the CAT scan, the larynx Dr is waiting for... oh well, you get the idea... But I have a feeling that the dominos are about to fall...
Happily married with two children (young adults). I was a business owner, but the impact of the disease was so bad that I had to sell to my partner. Sarcoidosis changes your life sometimes... Most of the time, if not all the time, I guess...