Author Topic: Yikes, what do I do now?  (Read 1467 times)

newtosjs

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Yikes, what do I do now?
« on: November 18, 2010, 04:55:06 PM »
Well, after all the advice from the folks on here, and my own research, I requested an apponitment at National Jewish Hospital in Denver. The Mayo Clinic in Rochester, which is where she wanted to send me,  doesn't even mention the word Sjogren's on it's website. I sent all the information to my Rheumatologist thinking there was time for her to review before I got an appointment. They called today with an appointment in early January. I called my Rheumy office and they said she will talk to me at my next appt, that is not until late December! I do not want her to get a call for my records before I even tell her that I requested this appointment. She is the best doctor I have found, and has helped me more than anyone else has. Any ideas out there? I do not want to look like I went behind her back.

anita

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Re: Yikes, what do I do now?
« Reply #1 on: November 18, 2010, 05:29:35 PM »
I agree with you about talking to her first.  Maybe you could leave a detailed message...or better yet, type it out and fax it to her (to ensure the message is relayed they way you want instead of how the staff relays it---if you know what I mean).

Actually, The Mayo Clinic does treat Sjogren's:  http://www.mayoclinic.com/health/sjogrens-syndrome/DS00147

But this is not the idea time of year to be heading there (although buildings are accessible via underground or skywalks).  They will follow strict guidelines/criteria for diagnosis, meaning if you are not sero-positive, then you must have a positive lip biopsy and schirmer's...as well as other notable symptoms/signs.

I don't know about the National Jewish Hospital and the criteria they use (but it may be available online).  If they are closer to you, then it might be your best move to try them first. 

Either way, good luck.

52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

sugarbugar

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Re: Yikes, what do I do now?
« Reply #2 on: November 19, 2010, 03:30:24 PM »
Newtosjs~ I have been going to National Jewish since March and I have wonderful Dr's there!  Dr. Meehan is the rheumatologist there and he specializes in Sjogren's and lung involvement.  Dr. Hamzeh is my pulmonologist and he's amazing!  I really think if you have lung involvement with your Sjogren's, NJ is the place to be.  I don't know if you can request your Dr's but if you can, I highly recommend these two.  I also see the Gastro there for my dysautonomia issues with my gut and she's awesome too!  Best of luck and I hope your experience there is as good as mine.  I truly feel they are working hard to help me out and always stay in the loop.  It was my Pulm. who started figuring out I had Autonomic Neuropathy and then sent me to University for testing.  I truly believe they won't stop until they can help you live a better life.  Good Luck :)

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