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Regular Member

Date Joined Sep 2014
Total Posts : 55
   Posted 1/7/2015 10:25 AM (GMT -6)   
My rheumatatologist referred me to Mayo Clinic to see if my symptoms are due to CNS lupus. I guess CNS lupus is rare and requires different treatment. Many of my symptoms could be just regular lupus.

I'm bringing a list of my complaints and medications along with a timeline of my symptoms. I'm also bringing all of my medical records.

Can you think of anything I'm forgetting?

Can you think of anything I should be asking? I plan to ask about treatment and prognosis.

I want to take full advantage of this opportunity to get accurately diagnosed and am afraid I'm going to get home and think "dang, I wish I had asked......" Or " shoot I forget to mention this......"

Thanks for your help! My appointment is January 14.
Breast Cancer Survivor, Lupus, Seizure Disorder, Depression

Regular Member

Date Joined Oct 2014
Total Posts : 27
   Posted 1/7/2015 11:06 AM (GMT -6)   
Good luck to you. I think I would take the opportunity to just ask what advice they would give you overall. I would also ask how could you contact them should you have any follow up questions. Also, if they think you should follow up with them every so many years. All the best to you and please pass on any good info you learn! Are you taking someone with you for another set of ears?

Regular Member

Date Joined Sep 2014
Total Posts : 55
   Posted 1/7/2015 12:46 PM (GMT -6)   
Good thoughts, thank you, Sarah.

Yes, my husband is going with me.

Veteran Member

Date Joined May 2005
Total Posts : 7720
   Posted 1/7/2015 1:26 PM (GMT -6)   
Read thru Fibro 101 -- there are lots of hints of things to ask about complied from different HW members over the years.

I would ask about preventative measures -- how to avoid flares, etc. Easier to stop things before they get bad than to recover from them.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
"Life is far too important to be taken seriously." - Oscar Wilde
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