Went to rheumy and got test results

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Regular Member

Date Joined Nov 2008
Total Posts : 92
   Posted 12/2/2008 11:33 AM (GMT -6)   
Hi all:
I was dx with fibro (10 years).  Then test positive ANA 1:640.  Saw rheumy today..she went over every test with me..test i didn't know was even ordered and the test for lyme disease.  All came back negative.  She told me that I don't have lupus..she said some meds I was on, probably elavated ana or a family gene.  But she gurantee I dont have lupus or lyme and none of the criteria. 
She think its fibro..until I told her about my tongue hurting and swallowing issues and how my leg has been weak off and own for years-pain and twitches.  She said she want to run some more muscle test (muscle enysmes did not show any break down of the muscles).  But I could have some rare mucles disease..but all the test her and other doctors ran are normal.  Now i'm really scared..(she even told me that when she first seen me she was worried for me-until she got the test results) ..Now she want to do more and said depending on the test she may refer me to the Mayo or Cleveland clinic, because she doesn't know what other test to do-ALL HAVE RAN.

Veteran Member

Date Joined Jul 2007
Total Posts : 1048
   Posted 12/2/2008 12:55 PM (GMT -6)   
I'm so sorry you are going through this turmoil. It is scarey not knowing. I know it'seasier said than done, but take a big breath and try not to panic. I will keep you in my prayers. Judy

Regular Member

Date Joined Nov 2008
Total Posts : 92
   Posted 12/2/2008 4:38 PM (GMT -6)   
Thanks Judy!!

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 12/2/2008 6:26 PM (GMT -6)   
Hey Keo . . .

It is scary. So sorry you are having to wait again. The good news is that your doctor is 'on the ball' with it. She is doing what many doctors won't . . . . by referring you to another doctor. I hope you'll keep us posted!!


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Veteran Member

Date Joined Jun 2008
Total Posts : 675
   Posted 12/3/2008 5:17 PM (GMT -6)   

Hi Keo- I know exactly what you're going through!  I have been referred to Cleveland Clinic by my rheumie (going in Feb.) and the only positive lab test for me is an ANA as well (over a year and a half) - same count as yours now, though it was higher in May.....despite all kinds of nasty and worsening symptoms.  I was also dx'd with fibro about 10 yrs ago.  I saw an Infectious Disease doc today - he agreed with the other docs that chronic Epstein Barr is not causing my symptoms.  He is running another test for a tick borne disease (not lyme) and one other I can't think of right now and also an abdominal ultra sound to check spleen and liver.  I have some other issues right now....high potassium for one....but I just wanted to let you know that I feel for you - it is scary wondering if all these years while you've been chalking symptoms up to fibro - that you were missing something important.  The infectious disease doc told me today that my history and symptoms in his experience look more like rheumatoid arthritis.  I think my rheumie suspects Lupus. 

This is a great forum for information and encouragement - the folks here are very encouraging and supply a lot of good information.  Like Rosie said, take a deep breath  and hang on  - you are very lucky to have a doctor who is taking you seriously and is referring you...that's a great start!


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing

Regular Member

Date Joined Aug 2008
Total Posts : 431
   Posted 12/5/2008 11:03 AM (GMT -6)   
Hey Keo,
Hopefully things will go better for you soon.  And maybe the tests  will be done soon that you can live with.  Many prayers going to my house to yours.
Lupus diagnosed 1996, Fibromyalgia diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008, Stroke 11-4-08
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  

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