Negative ANA - rheumys in Tennessee?

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KAnne1989
New Member


Date Joined Nov 2007
Total Posts : 16
   Posted 4/21/2008 11:45 AM (GMT -7)   
For nearly 10 months now, I've been suffering from photosensitivity of the skin, dry pleurisy, pnuemonia (twice), ever raising SED rates, painful joints/muscles, interstitial cystitis, and more. I've developed all of this within the last 9-10 months, when all this autoimmune problems start.
 
I have enough factors to be dx with lupus; here's the problem: I can't get a positive ANA. Without that positive ANA, the rheumys won't diagnose me. Isn't there ANY rheumatologist who will diagnose me without the ANA? Do I have to suffer with this for years before I can get treated?!
"Whatever life brings,I've been through everything
And now I'm on my knees
Hoping
But I know I must go on
Although I hurt I must be strong
Because inside I know that many feel this way...."
- "Don't Stop Dancing" Creed
 


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 4/21/2008 12:27 PM (GMT -7)   
KAnne,
I am so sorry to hear that you've been suffering so much. I have SLE with multiple organ involvement and have never had a positive ANA. I was dx's by renal biopsy. I had elevated sed, crp, rheumatoid factor. I'm not sure what the answer is for you. There are plenty of people in this forum that will be able to offer you some sound advice. Hang in there! God Bless YOu, Judy

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 4/21/2008 12:44 PM (GMT -7)   
Hi KAnne,

I've also never had a +ANA. While my doctors disagree on my dx, they still treat my symptoms. Your doctor SHOULD be treating your issues even w/o the dx. Are you on any meds??? How do they treat your individual issues??

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, Crohns, Diverticulosis, Sjogrens

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


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 4/21/2008 1:39 PM (GMT -7)   
If the rheumy isn't treating your symptoms it's time for a new rheumy. Yes you could go forever with a neg ana. Even a possitive ana doesn't mean you have lupus. It's just one of the many puzzle peices. No there is no reason why you should have to be suffering. Please see somone else. Make sure they know about A/I disease. Just because they are a rheumy doesn't always mean they know about Lupus.
I hope you get some help soon
hugs
carol
God Bless
Lupus like symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax 1.0 x3,Singular,nitro spray, aciphex, percocet 10mg.x4.,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!
 
 
 


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 4/21/2008 5:50 PM (GMT -7)   
I agree with the others, it's not the dx that is so important it's the treatment plan that's most important.

Your doctors want to be 100% certain before handing down a dx like that. Now, if your current doctor is not treating your symptoms and taking you serious then it's time to find another doctor. You must also keep in mind some doctors do not specialize in Lupus and want to see positive labs or something else staring them in the face like organ involvement, etc. Lupus can also mimic other diseases' so it's a big puzzle the doctor has to sort through, most of us wait at least a year or so and go through several rheumy's before we are dx.

Hang in there and keep us posted on how you are doing.
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed) and magic mouthwash (for mouth sores)


Snickerdoodle
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 4/21/2008 10:21 PM (GMT -7)   

I also do not have a positive ANA. Pretty much same symptoms, minus the pneumonia, plus dry eyes, numbness/tingling to hands feet, mouth sores, proteinuria, etc. However, I did have to switch rhemies to get treated. The first one had a reason for every symptom except my elevated ESR/CRP. She ran tests to no end, consults, etc. Since there were no answers, she would not prescribe any treatment. I finally went to see another doc and he started me on Celebrex and Plaquenil. I still dont feel great but there is definately improvement. You need to find an MD who will atleast treat your symptoms.

Not to scare you or sound to blunt but have you been tested for HIV? Alot of your symptoms (esp 2 bouts of pneumonia) are consistent with HIV. I know it was one of the first things I was tested for. I am sure they tested you for it, but I thought it was worse mentioning. (Sorry I am a nursing student too, I look into things too much sometimes)

Anyhow, The way I look at it the only negative to not having an official diagnosis is having to explain to everyone you are not a hypochondriac. You wont run into health or life insurance issues, no job discrimination either. Hopefully you will never get to the point of needing disability and having to prove your pains, etc. I hope you can find a doctor willing to treat you. And dont let them tell you you have Fibromyagia! Patients with fibro do not have elevated inflamation labs. They should be able to relieve some of your symptoms. Start off by asking for an anti-inflammatory like Celebrex or Mobic. Good Luck!


Dx: UCTD,Raynaud's,iron deficientcy anemia,proteinuria
Rx: Multi-rec folic 500, Celebrex 200 mg, Plaquenil 400mg, Ultram PRN

Post Edited (Snickerdoodle) : 4/21/2008 11:26:26 PM (GMT-6)


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 4/22/2008 3:35 AM (GMT -7)   
I am ANA negative and until I got treatment I had pnemonia every single year. Go ahead and get an HIV/AIDS test but also start looking for a local support group for lupus or check with the LFA lupus.org to see if they can refer you to a good rheumy.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec

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