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Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 6/29/2009 2:58 PM (GMT -7)   
So I went to my rheumy...again. Heres what we have pieced together... I have had 3 positive anas (1/160, 243 and another 1/160). I have also had elevated CK results including(277,352 and 157.) Based with that and my symptoms she is thinking it is autoimmune but not calling it anything but "lupus-like" at this point. I was prescribed 375mg of naprosyn and I went to see an eye dr today to hopefully start plaquenil. I am still in the "loop" of a diagnosis and was wondering who else is out there in this situation. What keeps you from being diagnosed? The seizures I had at 15 completes my 4 needed criteria for it but she isn't counting that one....? Anyone else? -Britt
*Wifey & Mommy*


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 6/30/2009 6:13 PM (GMT -7)   

I have a diagnosis of UCTD.  It looks like lupus in a variety of ways, but I don't have specific antibodies for it, just a high positive ANA and lots of symptoms.   I've learned on this forum (and between the lines from my rheumy) that the important thing is treatment - and we go from there. 

I've been in "the loop" for several years - but I had a fibro diagnosis clouding the picture.  Most people on here will tell you it isn't uncommon to take years for an actual diagnosis of Lupus, or any AI problem, for that matter.   I was very impatient to begin with - who isn't when you feel miserable and nothing concrete is coming into focus?  But being taken seriously and getting treatment has helped immensely. 

That your doc is willing to treat is a huge step.  The Plaq takes awhile - although I felt somewhat better within a few weeks - hang in there!

Lucy

 

 


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 6/30/2009 7:10 PM (GMT -7)   
Dear Wife and Mommy,

I've been diagnosed and then undiagnosed. They still "treat me" for lupus though. I'm always just as glad it is out of my records. The important issue is if they are giving you appropriate medical treatment. Many of us have come to believe it is a blessing to keep the word Lupus out of our medical records. It can really make it difficult to get medical insurance later. I know its really nice to have a name for your illness . . . but you are in good company.

Blessings!

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


mypearl
Regular Member


Date Joined Aug 2005
Total Posts : 215
   Posted 7/1/2009 7:21 PM (GMT -7)   
Have you ever had a miscarriage?

Lupus (SLE), fibromyalgia, T4/T5 & L fractures, hyperthyroid, pernisious anemia, Interstitial lung disease, vasculitis, neuritis, osteoporosis, gerd, APS, thyroiditis, complex thyroid nodules, asthma,  4 valve regurg., hemolytic anemia,


Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 7/2/2009 1:43 AM (GMT -7)   
Yes i have. 4 months before i got pregnant with my son. I was 9 weeks but didnt find out till i was 11 at the sono. Y though? I have been tested for antiphospholipids etc. All were of course neg.
*Wifey & Mommy*


mypearl
Regular Member


Date Joined Aug 2005
Total Posts : 215
   Posted 7/2/2009 9:06 PM (GMT -7)   
Im so sorry about your lose. I do know how it feels to loose a baby. I hope your healing well mentally.
Lupus (SLE), fibromyalgia, T4/T5 & L fractures, hyperthyroid, pernisious anemia, Interstitial lung disease, vasculitis, neuritis, osteoporosis, gerd, APS, thyroiditis, complex thyroid nodules, asthma,  4 valve regurg., hemolytic anemia,


firebabe
Regular Member


Date Joined Aug 2007
Total Posts : 206
   Posted 7/3/2009 7:27 AM (GMT -7)   
I was in the loop for 3 years. They just kept checking my blood and treating symptoms. Finally my urine tests starting showing increased protein. I had a kidney biopsey and was finally diagnosed. Drs. don't want to give you a diagnosis if they aren't sure. By doing so, they can really mess up alot of things in your life. For example, it can be harder to get insurance, both health and life. Some people become so bothered by it that they actually lose their job. I know my dr. told me to keep doing what I've been doind and make sure I get some resistance training in to stay strong. This can help with the joint issues we may have later on in the disease. The loop is not fun at all. I was actually relieved that they came to a diagnosis when they did. It was good to be able to tell people that I haven't just been making things up and I was able to take it more seriously as well.
~Tammy~
 "Challenges make you discover things about yourself you never really knew."
 SLE and Class II Lupus Nephritis

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