Hello everyone!!! My name is Lilli, and I'm new here. I've been reading alot of your posts. It makes me feel so much better knowing I'm not alone...
I'll give you a quick backround - I'm 41 (well this month I turn 41), married (to my BEST friend and BEST caregiver!), and have 3 kids (18, 12 and 10). I have had Type 1 diabetes since I'm 12, and was dx with Celiac in 2007. I have been dealing with odd rheumatological symptoms and clinical markers since probably 2004 - when I was dx with Lyme (but probably didn't have it), Fibro, and "markers for Lupus". The reason I wasn't dx positively then was because my ANA was negative and I didn't have too many of the physical symptoms, except for the pains etc. Fast forward to June of this year... and my ANA was positive, along with other blood tests, and have had almost ALL of the physical symptoms we get to enjoy everyday with Lupus... Go to a rheumy in NYC (from NYU) who was EXTREMELY thorough, spent alot of time with me, and said I had mild SLE - mild because I have no organ involvement. I can go on an on as to what has happened since then, but i'm not sure i'm positing in the right place -and quite frankly, we've all been thru it. One dr says yes, one said she was 100% sure, one said I was looking for a "label" (THE MOST obnoxious, pretentious doctor you will ever meet!! AND he's considered a TOP DOC in the Castle Connolly list - bla bla bla... a COMPLETELY RUDE JERK!!!!! ).... I'm on no meds, despite being prescribed NSAIDS and Plaquenil b/c I received such conflicting information and directions from these doctors that I got so FRUSTRATED I stopped it ALL! I am now dealing with what my GP has dx as Vasculitis as well - and Raynauds (always cold - hands are cold, numb - feet as well. Even the tip of nose and my ears get FROZEN).
I need a rheumatologist. Thats the bottom line. GP said to pick the one I disliked the least.. lol... If any of you could recommend (or even NOT recommend) any rheumy's in the Long Island or NYC area I would be SO THANKFUL!! I'm just looking for someone who will be thorough, knowledgeable, explain to me what is going on etc, and pleasant would be a BONUS!! ... I can't stand these doctors who have NO PERSONALITY - and worse yet, no answers, no explanations - NOTHING... I LOVE my GP - he even told me, rheumatologists just have no bedside manner.. lol.
Thanks again for your help!!