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tfofd
Regular Member


Date Joined Apr 2011
Total Posts : 56
   Posted 4/12/2011 8:22 PM (GMT -6)   
please delete

Post Edited (tfofd) : 6/10/2011 6:45:12 AM (GMT-6)


C/Z Fan
New Member


Date Joined Apr 2011
Total Posts : 19
   Posted 4/23/2011 11:22 PM (GMT -6)   
I like to get my bloodwork done before I go to my appt. to make a more useful diagnosis of my current condition. Sorry I don't have any ideas about the neurologist but keep an ongoing list of things you are noticing and questions you have. Good luck!

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 4/24/2011 10:40 AM (GMT -6)   
Check out the articles in the Lupus Resources thread that is referenced in my signature. It contains ideas from several members about how to prepare for a drs visit and what info to bring as well as what you might want to ask about.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

mscrowbar
Veteran Member


Date Joined Nov 2010
Total Posts : 877
   Posted 4/26/2011 7:30 AM (GMT -6)   
Did you get any of the answers that you were looking for. I am in diagnosis limbo too and just always have questions, some I remember, some I don't. Sometimes the opportunity just doesn't seem to come up and the questions go right out the door. Seeing my rheumy on the 11 of may and the endocrinologist on the 9th of may. Hopefully between the two of them.........?
Denita
***************************************

Fibromyalgia. Arthritis/bursitis/meniscus tears in both knees.
Cancer survivor

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 675
   Posted 4/26/2011 12:40 PM (GMT -6)   
tfofd,
Hang in there.  At least you have one doctor in your corner.  I had a rheumatologist tell me that all my problems were due to fibro (which had been diagnosed 10 years prior).  I felt like I had had it and managed it long enough to know that something else was afoot. 
 
He told me I would need to have quarter sized bald spots on my head (I complained of hair loss) and nickel sized sores in my mouth that lasted longer than five days (I had smaller mouth ulcers) for a lupus diagnosis, which is what the previous rheumy had suspected was in the works.   He discounted the rather high ANA.  Therefore - it can't be lupus.  He told me to drop back to 200 mg of Plaquenil daily - which I did (I mean, you know - I was kinda hoping he was right) and in a few short weeks found myself in a major flare.
 
Now, it may not be lupus - my current rheumy, (an associate of that last one) who is also head of the rheumatology department at a teaching hospital, is leaning toward RA, but is leaving it at UCTD for now.   He told me to be sure to stay on 400 mg Plaquenil.  He's ordered XRs.  He also concedes to fibro as a presence and complicating problem, but is not a singular diagnosis.   It's a wait and see, diagnosis in the works, sort of thing.  And it's already been over 3 years and I'm on my 3rd rheumy.   
 
I know how frustrated you are and how hard it is to keep looking for the right doctor - but your neurologist is right - meaningless help is just that.  Take care of yourself along the way and don't give up.
 

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 4/26/2011 2:16 PM (GMT -6)   
Bald spots and mouth sores for a lupus diagnosis!!!

Now I know that didn't help you any, but that is certainly one of the most bizarre requirements for this disease that I have ever heard of!! As I laugh out loud and shake my head, I have to wonder what medical school he's from so I can avoid his classmates!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 675
   Posted 4/26/2011 3:12 PM (GMT -6)   
I know....right!!?   If it wasn't for the harm they do, you could almost feel sorry for them!  Maybe we could refer to them as "one visit wonders". turn
Lucy
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