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Old 11-02-2007, 10:32 PM
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LizaJane LizaJane is offline
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Join Date: Aug 2006
Location: Brooklyn, NY
Posts: 805
15 yr Member
LizaJane LizaJane is offline
Member
LizaJane's Avatar
 
Join Date: Aug 2006
Location: Brooklyn, NY
Posts: 805
15 yr Member
Default Hi

Hi Fanfaire, I think you should bring as compact a packet as possible. They all love the spreadsheets, and it condenses things, so I'd fill those out. Even if you do it by hand, it's a lot easier for them than going through pages of separate test reports.

For my last visit I made a small looseleaf, presentation type. On top was a bio with a summary of why I was there, what I was hoping to learn, and a photo. I know Billye brought one also, and if you like, I'm sure we can share these with you privately, so you get an outline. I can show you what my lab sheets look like, if you like; i've posted links here before to them.

I had sections labeled ENT/MRIs/Blood Tests/Gastro/Rheum

Each section had the latest report from the current doctor.

Do NOT have too much info; it will just not get looked at and make it harder for them to find the important stuff.

I have to tell you, I do not love their rheum department, and many of my pals from another board have had similar bad experiences; however, I believe Billye had a good one. You can ask for a specific doctor this far in advance, so if Billye really liked someone, I'd go there. I liked my spine guy and pain guy. If you go to the Mayo site, I think you'll find there's a rheumie who specializes in Sjogren's, and that might be a good one for you to try to see.
Th pain guy I liked was Dr Hurdle, and the spine surgeon was Dr Pichelman.
I did not care for my pn specialist, Dr Dot...something. Perhaps other people can shar their experiences on this.

Having a good bio with a timeline is key, I believe, with major summaries from the various specialties. You can ask each current specialist to write one and give it to YOU as well as Mayo. YOU can send it to them, as well as carry it.

Hope this helps. If you have specific questions, ask away. You can always bring a laptop, too.
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--- LYME neuropathy diagnosed in 2009; considered "idiopathic" neuropathy 1996 - 2009
---s/p laminectomy and fusion L3/4/5 Feb 2006 for a synovial spinal cyst

Last edited by LizaJane; 11-03-2007 at 06:25 PM.
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