New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

New Member

Date Joined Nov 2010
Total Posts : 3
   Posted 11/12/2010 10:23 AM (GMT -6)   
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!!


Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 11/12/2010 1:21 PM (GMT -6)   
Welcome to Healing Well, I'm glad you found us.

We can neither recommend or disparage doctors on the open forum. Please post your email in your profile, that way if anyone cares to answer your post they may do so privately.

Please note that Lupus is a between-the-lines disease - symptoms vary unpredictably, sometimes even on a day-to-day basis. It's beyond the explanation for the medical field as a whole. Many of us are never "officially" diagnosed, since diagnosis is a combination of a number of variable symptoms and not by a single simple blood test. Having a rheumy that treats your symptoms is often the best we can find.

Best wishes,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

New Member

Date Joined Nov 2010
Total Posts : 3
   Posted 11/12/2010 7:27 PM (GMT -6)   
Thank you Lynnwood for letting me know that. I did know that, and yes, I am putting my email there, so I hope if anyone has any info, they will pass it along to me!

The first dr. I saw in NYC gave me anti inflammatories to take 2 x a day, then started me on plaquenil. The second doctor told me, the anti inflammatories were only to be taken as needed, and to NOT take the plaquenil b/c it would probably not help me. The 3rd doctor told me to take nothing.... he was the one who said I was "looking for label"...

So, as you can see, I left completely confused and I stopped taking EVERYTHING... now the vasculitis got worse...

Again, if anyone can give me any suggestions privately that would be wonderful!! and VERY VERY much APPRECIATED!

"Talk is cheap. Performance is priceless"

Veteran Member

Date Joined Jun 2008
Total Posts : 1470
   Posted 11/13/2010 8:13 AM (GMT -6)   
Contact the local lupus chapter for new york.
New York

LFA, New Jersey Chapter - Springfield, NJ
973-379-3226, Toll Free 800-322-5816

There is also the Lupus alliance in Buffalo that would also be able to advice you in the right direction of a good rhuemy!

Lupus Alliance of America
3871 Harlem Rd.
Buffalo, NY 14215
Phone: 1 (866) 415-8787
Kidney Diseases & Disorders and Lupus Moderater
Cyclosporine, Prednisone, Lisinopril, Integra Plus, Vitamin D 50,000 units
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram, Darvocet, Zofran

If God brings you to it, he will get you through it!!

Regular Member

Date Joined Sep 2010
Total Posts : 24
   Posted 11/14/2010 10:07 PM (GMT -6)   
Hey Lilli, hope you are doing well. I was wondering if you went to nyu hospital for joint disease? I recently started attending in September and they have been the absolute most helpful and interested doctors I've encountered. I attend the lupus clinic which is held every Monday and they really take their time with each patient (believe me the wait is long; I take a whole work day off lol) and they made me feel soo comfortable speaking to them and asking for my input in my treatment. I def would recommend NYU Hospital for Joint Disease. I was dx in 08 and was also told I have mild sle, but i was put on plaquenil 400mg a day immidiately, once I started attending the hospital for joint disease I was put on mtx 7.5mg a week for a month to test it out. So hopefully if you see the lupus specialist there you would have a better chance for some answers. I don't have organ involvement thank God; and I hope yours continues to stay the same way; but you should attend the lupus clinic if you haven't done so.

New Member

Date Joined Nov 2010
Total Posts : 3
   Posted 11/16/2010 9:31 PM (GMT -6)   
Thank you for your suggestions, especially the Lupus Clinic in NY - I actually did not know about it, but am going to find out more info tomorrow.

I actually was recommended a doctor by a good friend of mine who has Lupus. My husband's insurance carrier is changing January 1. He does not take my current insurance, but does take my new one. The office WOULD NOT make an appointment until I actually have the new card! We called twice. The doctor is currently booking into January, which means, I have to wait until mid December to get my cards, then another 6 weeks to get in to see him... So frustrating! I even asked if I could make an appointment as a "cash" patient, then call with my insurance info - they absolutely said no - this was their "policy"... Makes NO SENSE...

Thanks for your help!
New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, September 20, 2018 11:45 AM (GMT -6)
There are a total of 3,005,107 posts in 329,198 threads.
View Active Threads

Who's Online
This forum has 161762 registered members. Please welcome our newest member, TruthSeekerSam.
274 Guest(s), 16 Registered Member(s) are currently online.  Details
SoMuchFun, 81GyGuy, acarined, sebreg, Girlie, Lymie24, Sherrine, SwollenColon93, InTheShop, garyi, franko63, ltc1225, tiredofallthispoop, CCinPA, Worried Guy, Shayanv