confused about rash, symptoms and the whole thing

Jenfrombill · Little Guppy Joined: 18 Jun 2008 Posts: 36

Yes, I am from Boston. I didn't even know I used the word wicked.. LOL! I asked my primary again, which normally he is useless and he is upset and confused as to how she thought my CRP should have been 50.... he said he never heard of that? Maybe you're right she had it confused... which is not comforting! So who do you know in Boston that is good? I need help! As far as my spine goes... my pain is actually in my spine, maybe between veterbra (sp?) I was told before I had a lot of inflmation in between them. She said no fibromalagiya (again Sp!) for me. Maybe when she has her lab tests she will understand them better?

laurid8967 · Posted: Thu Jul 24, 2008 3:02 pm Post subject:

Jen-
I dont know how I missed this post!! I did get your PM and I gave you my docs name and address, etc. What hospital have you been going to? I also said in my post that - in my experience - sometimes the big-wig doctors have seen the WORST of the WORST cases. And because of that, the somewhat minor cases, or questionable cases, are dismissed.
I have not been to one of the big hospitals in a few years, not since my symptomolgy and blood work became much more indicitave of lupus - so I dont know what they would say today. But, a few years ago, I went to:
1) Brigham and Womens (the doc I saw was voted one of the best rheumies in the country(proffessor at Harvard)
2) New England Medical (saw the director of the arthritis center/proffessor at Tufts)
3) Mass General - one of the top immunologists/ proffessor at Harvard
4) The first two one more time each..
All said "something" going on, but not sure what...fibro (bull) The Brigham and Wom doc put me on prednisone; NEMC doc wanted me to come back in 6 months - didnt.
My blood work back then didnt even show inflammation (normal sed and CRP) and all my other blood was normal - That has changed dramatically, so Im not sure what they would say today.
My point is, however, that these docs see EVERYTHING, so any "borderline" or questionable case seems like no big deal to them, you know?
When I did decide to pursue an answer again after I got sick this winter, I went to a well-educated MEDIUM sized office. My doc has many patients, and is affiliated with all the best hospitals (has priveledges there), but hes not so big that Im almost intimidated by him, you know? If my lung involvement got really bad, or more organ involvement happened, I know I can go into one of the best hospitals, but Ill stick with my doc anytime...
So, where do you live? What hosp/med center have you gone to? My doc is Dr. Daniel Sheff at Granite Med Ctr in Crown Colony (the big medical bldgs right off the Xway in Quincy). AND - I was able to see him in a couple of weeks!! (Though, Ive never waited as long as some of the people here for appts. That must be HORRIBLE!!). Ive waited like 6 weeks maybe at the most. We are so lucky we live in Boston with all the great medical care right at our finger tips. When you get a chance, let me know about the ?? I asked...maybe weve seen the same doctors!! lol
Love Lauri
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The courage to change the things I can,
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