Did you have difficulties getting diagnosed?

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Miss Magnolia
Regular Member

Date Joined Nov 2007
Total Posts : 95
   Posted 11/8/2007 12:50 PM (GMT -6)   

I went to my Rheumy twice and when I went in for the results for blood test, his exact words were " you tested positive for lupus". I am looking at my test results right now and it says ANA Hep 2 titer" POS 1:1280.

Now at the third visit, he is telling me I DO NOT have lupus but fibromyalgia and I am now taking Lyrica at night.

I am still getting these raised bumps which turn into a tiny blister and leaves a scar for awhile, on my stomach, back, shoulders and arms. He said nothing about the bumps, but he saw them when he examined me upon my first visit.

In the book I started reading about lupus, the woman who wrote it said she was diagnosed, undiagnosed, diagnosed, undiagnosed a few times. The RN/Paralegal I have worked with for a long time sees me every day and she said she still thinks I have lupus. Anyone here have difficulty getting the right diagnosis?

Regular Member

Date Joined Aug 2007
Total Posts : 206
   Posted 11/8/2007 4:00 PM (GMT -6)   
HI Miss Magnolia.  I did have problems getting diagnosed.  In fact, it took 3 years to get a correct diagnoses.  My doctor used to put on my charts that I had an unexplained arthritic condition (not arthritis either).  The thing about Lupus, as you may already know, is that there is no 1 blood test that can tell you whether or not you actually have it.  You have to have a certain ## of criteria before actually being diagnosed.  I, as well as most people on here have a high ANA level, I also have a high ds-antiDNA level in my blood.  I've never had rashes, going out in the sun only makes me tired and achey the next few days, there are quite a few of the Lupus criteria that I do not have.  However, this last spring my urine tests came back with blood and protein in them, prompting my doc to send me to a nephrologist.  It was decided to do a kidney biopsy-thats what actually diagnosed me-finally.  It's a very strange disease, and no 2 people are going to be alike.  Hang in there and keep a notebook of the changes you go through with this.  Keep track of your pain level, any swelling, muscle soreness, fevers (these I didn't get very often either), fatigue and other factors that may help your doctor determine if he is looking in the right direction.  For many people it can take years to be diagnosed, and if you are one of the lucky ones, you may never have to deal with the "flare" that you are going through again.  I know that I had a small round of prednisone in the 1st 6 months in which they suspected Lupus, and once I was off of that I didn't have a flare for 2 1/2 years.  I was luckier then, but that doesn't mean you can't be luckier.  Good luck and keep us posted.

"Challenges make you discover things about yourself you never really knew."
SLE and Class II Lupus Nephritis

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Date Joined Dec 2004
Total Posts : 8198
   Posted 11/8/2007 9:20 PM (GMT -6)   
Hi Miss Magnolia,
   I'm sorry your going through this rollar-coaster of trying to get dx'd. I hope you get the right answers soon and on the right treatment plan to feel better. Hang in there!
  I started having symptoms when I was 19 years old and wasn't dx'd till 13 years later, in 1990. I'm now 49. I moved several times during that period so it was kind of hard for doctors to put it all together. Hopefully, you won't have to wait much longer.
  Please keep us updated and take care. You will be in my thoughts and prayers.
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
mirapex,advair,foxamax,Vytorin,folic acid,prednisone,lunesta,Chantrix,Tramadol,Nitro.
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

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Date Joined Jan 2005
Total Posts : 8616
   Posted 11/9/2007 12:48 AM (GMT -6)   
Hi Magnolia . . . the others gave you some great advice.

You might check out the links in my signature . . . very helpful.

I've also been dx'd and then undx'd . . . going to a new rheumy on Thursday (finally) as my old one no longer takes my insurance (have been w/o for about 11 months now).

I really think they figure it out but they don't want it in your records. If they are treating your symptoms . . . I wouldn't press for a dx because its not a good thing to have in your records if you try and get new insurance.

Make sure you ask him about the bumps too. There IS an arthritis called psoriatic arthritis . . . it acts a lot like lupus and these people will usually have psoriasis or family members have psoriasis. Not sure how that looks on your skin though.

Take care and keep us updated!!


In His Grip

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

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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

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Date Joined Jul 2005
Total Posts : 5403
   Posted 11/9/2007 10:28 AM (GMT -6)   
Miss Magnolia, I am also very sorry that you are on this rotten rollercoaster ride - it's so frustrating and upsetting. I'm another person that it took a while to get a diagnosis. It took about three years and my 3rd rheumy to get a diagnosis. My first rheumy I only saw a few times because he said I had fibro and not lupus despite a positive ANA and elevated sed rate and then he ignored all my new symptoms that pointed toward lupus. My second rheumy knew it was not fibro but just said it was arthritis, arthralgias (sp?) and fatigue, but she did start me on plaquenil. I kept getting sicker and sicker and she wouldn't do anything more for me. I was so sick by the time I saw my current rheumy that it didn't take him long at all to diagnose me. He told me I have lupus but writes UCTD on my chart so that it won't have such a negative impact on my insurance.

Hang in there and don't give up. You have a pretty high ANA that shouldn't be brushed off. Did your doc change any meds now that he undiagnosed you? Also know that if you aren't happy with your current rheumy you can get another opinion.

Take care and you are definitely not alone in this.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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Co-Moderator: Lupus and CFS Forums

Regular Member

Date Joined Nov 2007
Total Posts : 47
   Posted 11/9/2007 11:05 AM (GMT -6)   
I've also had a lot of problems getting diagnosed, I know it's hard to deal with. I went through over a decade of doctors and ER's making me feel as if I was crazy. I was diagnosed with FM at a pretty young age, but apparently they didn't suspect Lupus, until recently when I started having total unexplained seizures. I've had an elevated ANA level, and also a low platelet count. I hope you get the diagnoses you need. I know that after I was diagnosed it was almost a weight off my shoulders.
Best wishes.

Miss Magnolia
Regular Member

Date Joined Nov 2007
Total Posts : 95
   Posted 11/9/2007 5:37 PM (GMT -6)   
Thanks ladies for replying. Patti, the nurse paralegal told me to just keep an eye on things and take the Lyrica and see what happens.

And thanks Rosie, I am going going to check the internet to see if they have any photos of psoriatic arthritis to see if it looks like what I have.

Regular Member

Date Joined Dec 2006
Total Posts : 102
   Posted 11/10/2007 12:26 AM (GMT -6)   
Oh, absolutely! It's been nearly four years for me. Four rheumy's later, they still aren't sure what exactly is going on with me. Two said I definitely had lupus, two said I didn't. I've had positive ANAs, negative ones, all sorts of ups and downs on bloodwork.

My current Dr. (my favorite...I've had her for two years now) doesn't seem to think it's lupus but said it could just be that enough symptoms haven't manifested enough yet for her to feel comfortable with diagnosing it as that. She is very cautious about making a diagnosis unless she's absolutely certain (partly because of not wanting me to be "labeled" a high insurance risk). I'm glad for that.

I joined this group when I was seeing one of the "Definitely lupus!" rheumatologists, so I still hang around even though my diagnosis is not carved in stone. I still tell non-lupies that's what I have, because it's a heck of a lot easier than saying, "Well, I have this lupus-like non-specific autoiummune disorder with arthritis..."

It helps to know that others have gone through a long process to find out what's going on. The uncertainty still drives me crazy sometimes.

Wife, writer, artist, homeschooling mom to 2 wonderful boys
Lupus (dx May '04), arthritis, PCOS, being tested for vasculitis and Behcet's
Now taking: plaquenil, limbrel, metformin XR, ibuprofen and the occasional percoset for pain

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Date Joined Apr 2006
Total Posts : 1344
   Posted 11/10/2007 12:22 PM (GMT -6)   
Lupus is the disease with a 1000 faces and often mimics other diseases.  Almost all of us have had difficulty getting a diagnosis and it is very frustrating.  Keep a log of symptoms, doctors visits, tests and anything else that affects your health.  It might help the doctors with symtpoms and diagnosis.
It took my docs about 10 months from the first symtpoms but they were able to confirm lupus and then mctd within 4 months of the first flare.  However, I had telltale symptoms in my blood work (low platelets and mild anemia) for 15 years before the first flare with no diagnosis at all.  Fortunately, my doctors keep looking and testing my blood periodically even though I seemed very healthy.
Diagnosis can be very difficult and frustrating.  Have you gone to a clinic like Mayos, Northwestern, Johns Hopkins, Cleveland Clinic where they can look at many things at once?
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
Meds: prednisone (6mg & tapering), 75mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, folic acid, potassium, aciphex 20mg, multi vitamins.
Maintain your optimism and you can beat the odds.
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller

lupus fighter
Regular Member

Date Joined Nov 2007
Total Posts : 50
   Posted 11/13/2007 3:41 PM (GMT -6)   
I understand how you feel Miss Magnolia. I think the one thing most people with Lupus have in common is the fact that The diagnosis was usually very difficult to obtain. I think often all of the symptons are not linked together and the doctors don't make the connection. I started out with a lot of swelling in my hands. Doctors were sure I had corporal Tunnel Syndrome. Then my knees and ankles started swelling and always hurting. I lost a lot of weight. I was extremely tired. It just seemed that so many things were wrong at once. I had to be hospitalized several times for pneumonia,and pleural effusions, and the doctors wanted yo understand why I kept getting fluid on my lungs,and I was extremely anemic. I had to have a kidney Biopsy and they discovered That I had Lupus Nephiritis.
Loving Life 

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