Update: Still No diagnoses but Positive

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Regular Member

Date Joined Feb 2012
Total Posts : 114
   Posted 12/9/2013 1:29 PM (GMT -6)   
Hi Guys,

Went to see Rheumy today and still no diagnoses but we have a game plan. ANA is still positive 1:160 with Nucleolar pattern and has been the same titter and pattern for over a year. All other numbers are normal so she started me on Planquil today and I have to get an Echocardiogram and a Pulmonary Function Test. I go back in two months and by then I should have all of these test done and gone to dermatologist.

She said there is something auto-immune there but it is not active and I could have fibro on top. I think she has something in mind but is keeping it to herself until all test results are in.

Can anyone tell me why I would need an echocardiogram and a pulmonary function test? She said she just wanted some baseline numbers.


Regular Member

Date Joined Nov 2013
Total Posts : 22
   Posted 12/9/2013 3:09 PM (GMT -6)   
Just speaking from personal experience (and certainly with no medical/doctor experience), it sounds like she's getting serious with trying to find out what's going on with you. Getting a baseline of numbers is good, so that when you're having a flare, she can compare the numbers and it may help point to a diagnosis. If she's sending you to a dermatologist, it could be to check for rashes? Have you had one recently or in the past? The echo and pulmonary are tests done for different types of diseases all that fall within the autoimmune/inflammatory family. She should be able to tell immediately if you have fibro (research the tender points to double check - I have all of them).

I am used to saying to myself 'hurry up and wait'. That's what you have to do unfortunately, be patient, but don't let the docs tell you 'it's nothing'. One of mine told me, if it was anything serious, then I'd be dead! Needless to say, I don't see him anymore.

Good luck with the results.
Sue - English transplant living my American Dream.
Living with undiagnosed disease since about 2005. Many symptoms including joint and muscle pain, inflammation and pain everywhere from scalp to ankles.Large intestine not working - removed. Right sided weakness, frequently unable to walk, memory problems, restless legs, body cramps esp in back and legs, eye and facial twitches. Also fibromyalgia.

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 12/9/2013 4:15 PM (GMT -6)   
It is good that she is taking preventative steps (Plaquenil) while still searching for definitive answers.

I think she is being honest, the tests are simply to get some baseline numbers. Just from that, I'd guess you are around 50 -- if a lot younger than that, maybe she's got something on her mind but I don't know what it might be.

Sounds like you are with a decent Dr, so try to be patient and let her do her job..it can be frustrating, as with these things diagnosis often takes forever. But getting treatment is much more important than a firm dx, and it sounds like she's prepared to do what it takes.

Keep in touch,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Regular Member

Date Joined Feb 2012
Total Posts : 114
   Posted 12/9/2013 4:34 PM (GMT -6)   
Thanks for the replies. Sue that is exactly what she said she wanted baseline numbers. The dermatologist is because I have some hair loss on the ride side by the temple and thinning on the left side. She wants to see if it is from braids or related to auto-immune.

Lynnwood, I am actually 32 will be 33 this month. She did say in two months if the Plaquenil to see if it is helping if not she will add another pain med.

I am very happy with this doc. She takes time and listens to what my symptoms are and then brings everything together with the blood work.
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