FOLLOW UPS

July3rd, 2007. Back to Quackadoodle #5 Rheumy for follow-up. This is what his report read:

'The differential diagnosis includes Sarcoid and Lupus. The most likely is Sarcoidosis at this point. It is far more likely to cause Uveitis than is SLE (Lupus).
Supporting features suggestive of Sarcoidosis include: elevated ACE level, fever, fatigue, weight loss, malaise, liver abnormalities and Uveitis.
Supporting features suggestive of SLE (Lupus) include: Alopecia, Pleurisy, photosensitivity, H/O miscarriage, Proteinuria, fatigue and lab work including ESR, CRP and ANA.'

Sounds pretty split down the middle, huh. So, no answers yet but I was hopeful they would find some granulomas on my CT scan and ultrasound in a few days. What a thing to hope for. But, at the time, I thought the only way I would get a solid DX was a biopsy and I wanted desperately to put a name on my pain. I couldn't imagine going through years of wondering...

July 5th, 2007. CT scan of my chest showed scarring at my right lung base but was otherwise clear.
July 10, 2007. Abdominal ultrasound showed mildly enlarged liver and spleen.

Sure enough on July12, 2007. Follow-up lab work corresponded as my inflammatory tests were within normal limits. I know some of you don't appreciate this but thank god for Prednisone. Today, I had 3 follow up appointments. One with Neuro, Dr. Rau. My neuro symptoms were under control and he released care. One with Pulmy Barefoot Quackadoodle #8. I was still having the rough breathing, so I convinced him to order some PFT (pulmonary function tests). I felt it should have been done in the beginning and at least I would have a baseline if this condition continued. I was becoming quite educated on Sarcoidosis and felt like I had to educate these boneheads. I would mention something about the disease and he would tell me he never heard of it. JEEZ, at least Google every once in a while. Now, explain to me why a Pulmonologist wouldn't know a disease like Sarcoid inside and out when 90% of sufferers have lung involvement (actually, more than 90% according the the American Lung Association)!!! Just pisses me off. He kept saying "I really think you have Lupus". Anyway, I got the PFT ordered and I was on my way to see Rheumy I Can't Make Up My Mind Quackadoodle #5. Not a good day for me. He reviewed more tests and surprise, he was still undecided about my DX. He seemed very unconcerned because my tests were looking good. I had a rash on my face and back that had developed so he referred me to a Dermatologist. He finally prescribed Actonel which is used to protect from bone loss caused by Prednisone use. He talked to me about Methotrexate and Remicade at that point and started to reduce my Prednisone. He told me to follow up with him in 4 weeks, HUH???!!! Well, I was seeing Dr. Shein (eye doc) tomorrow and since she is more knowledgeable than this turd, I will talk to her about treatment.
July 13th, 2007. Had a flourescein test with Dr. Shein. Optic nerves are still slightly elevated but everything else is looking good. We talked about Sarcoid and she still thought I had it. She ordered a Lysozyme test (something she had requested from #5 in the beginning but he never ordered it), but didn't think it would show much because the inflammation was subsiding. Turns out she was right. She is keeping me at the Pred drops 4 times a day and I am to follow up in 2 weeks. I feel like a pin cushion. But at least I know that there is absolutely nothing else wrong with me except this mystery illness...