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Old 05-20-2010, 12:53 PM   #1
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Question Just Curious, Lupus with Negative ANA

I am one of those rare people who have Lupus with a negative ANA and it took some time diagnosing it let me tell you (as if diagnosing Lupus isn't hard enough) throw a negative ANA in the mix LOL. I'm just curious to see how many of us folks are truly out there. My doctor said it's anywhere between 1-5% of Lupus patients that test negative on ANA's.

I would love to hear your experiences!

 
Old 05-20-2010, 07:45 PM   #2
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Re: Just Curious, Lupus with Negative ANA

Galpster, yes, a very difficult Dx! I had things piling on over many years, without a CLUE as to why. Two life-threatening episodes as a child when overdosed with sulfa antibiotics, with 106+ fever, convulsions, pneumonia and encephalitis. Age 8, widespread bullous (watery blistery) rash. Age 13, a solid year of pain, elevated ESR, leukopenia, and low-grade fever. That's also when fatigue episodes began. Next add-on: heavy periods, sometimes lasting 12+ weeks. Next add-on, in early 20's, chronic irritable bowel, with episodes that sometimes landed me in hospital on an IV. Next add-ons, early 30's, migraines and urinary misery. Next, mid-30's, a terrible episode that may have been mesenteric vasculitis, but I'll never know for sure. Final add-on, early 40's: annnular (targetlike) nonscarring rashes on arms & back that were mild for 4 years, then ramped up over next 4 years.

After seeing local drs---multiple gastroenterologists, urologists, GYN's, neurologists, dermatologists, and one rheumatologist---one local specialist suspected lupus but no one to whom he referred me agreed, as my ANA remained negative. I finally took myself to a teaching hospital rheumatologist. He re-did bloodwork & urinalysis, and also sent me to a dermatopathologist who did one last deep-punch skin biopsy, THIS time finally adding immunofluorescent stain tests. Dx was Ro-lupus. Plaquenil kicked in nicely, but I still have bouts of fatigue and pain.

My suburban drs. would have NEVER figured it out. I doubt they'd ever seen this subset of lupus. They'd certainly never seen my targetlike lesions. For those alone, I saw 6 dermatologists and had 3 deep-punch biopsies, to no avail. I got LOTS of sage advice. FIND YOURSELF A GOOD THERAPIST. GET RID OF YOUR DOG. LEARN TO LIVE WITH "IRRITABLE BOWEL", MANY PEOPLE HAVE TO. STOP STARVING YOURSELF, GAIN SOME WEIGHT.

And, the most disgusting & moronic of all, I THINK YOU JUST LIKE COMING TO MY OFFICE BECAUSE YOU LIKE ME. That's the one who sent the nurse out of the room then GROPED me. To this day I'm proud of my response. I told him if I ever developed an insatiable lust for the PILLSBURY DOUGH BOY, I'd give him a call. Needless to say, that was my last appt. with him.

I can laugh now, but it wasn't funny during those long years. How about you? How were you treated? How long did it take for someone to suspect lupus? Who first suspected it, and who diagnosed you? Most important, how are you doing since? I hope well! Sending warm wishes, Vee

Last edited by VeeJ; 05-20-2010 at 08:02 PM. Reason: spelling

 
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Old 05-28-2010, 04:58 PM   #3
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Re: Just Curious, Lupus with Negative ANA

I have been diagnoised with Fibro and Lupus. Getting dx for Lupus was a roller coaster ride. I have negetive ANA with elevated ESR. My GP was initially treating me with anti-depressants and was so reluctant to refer me to a rheumatologist. I did not have a dx of fibro or lupus when i was treated by my GP. I used to go to acupunturist, chiropractor and massage therapist. Only combination of the three therapy would give me some relief. I initially did not depend on medication, as I understood that any amount of tylenol, ibrufen, painkillers taken will not relieve the symptoms. My symptoms would pop up right the next day after the treatment. It was very frustrating and surprising to me to understand what was happening to my body.

My history :
My fatigue and low grade fever started in my teens and then I had severe rashes and blisters on my face neck, back and head. Then I had alopecia, i had no hair on my head, eyebrows and eyelashes. I had this problem for a year and no medications helped. I also had memory problems and could not concentrate. I was doing my MBA and I could not give my exams as I had anxiety attacks. I took a meditation course and it was a very good 10 day course - VIPPASANA (a buddhist medidation course). I recovered from my alopecia, anxiety and other personality problems. After few years got married and had difficulty getting pregnant, so had to go through IVF. I already was suffering from muscle/nerve pain and joint pains. The IVF treatment in which I tood estrogen.. only added to it. During pregnancy I could not notice much .. but after I stopped breastfeeding and my harmones settled down, my fibro symptoms got worse. I managed to just go to work with acupuncture treatments 3 times a week and once a week visit to chiropractor and massage. I had no time left to do anything else .. work and treatment..and was hard to take care of my babieS.. yes had twins. I was too much in pain and had to take more pain with acupucture trt. It was then that I refused to listen to my GP and pushed her hard to refer me to a rheumatologist. Life change after I meet my rheumatologist. I explained to him how I was suffering from pain, the muscle pain, tender points, joint pain, dry eyes, dry mouth. He connected all the dots. I am really blessed to have him as my doctor. I was diagnoised with fibro and he suggested me to go on disability. since one year I am on disability. I was then diagnosed with LUPUS and then Sjrogens. I am still suffering from Chronic back pain..radiating to my arms and hand, and have no strength in my arms. Also suffer from chronic fatigue, diffused muscle pain all over the body, sciatic pain and cannot sit or stand more than few min, migraines, blurred vision, dry mouth, dry skin, insomnia, short breath, bloating, acid reflux, digestive problems... goes on and on..

I am of on disability since a year and just taking alternative treatments with plaquenil.

 
Old 07-10-2010, 10:12 AM   #4
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Re: Just Curious, Lupus with Negative ANA

i too have lupus and a negative ANA,, i had very low C3 and C4 counts, butterfly rash, extreme painful joints, plurisy, unexplained episodes of strep throught, and lastly interstitial cystitis. so i know exactly where you are coming from

 
Old 07-12-2010, 06:08 AM   #5
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Re: Just Curious, Lupus with Negative ANA

Wondering if any of you have other auto immune disorders such as common variable immunodeficeincy? I have this so am prone to Lupus (suspected) waiting on Dx at Toronto Western Lupus clinic as I have 8/11 criteria and my immunologist just found APS after a pulmonary embloism. I have also been on disability for 21/2 years due to all my issues, but also have had a negative ANA!

 
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Old 07-20-2010, 06:36 PM   #6
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Re: Just Curious, Lupus with Negative ANA

at first they dx my and i am sure everyone else with UCTD

 
Old 07-20-2010, 10:37 PM   #7
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Re: Just Curious, Lupus with Negative ANA

Good timing since I just saw my Kaiser rheumotologist today who said I do not have an autoimmune disease as my ana was negative both times it was tested. My history. I had breast implants for 3 years was fine then came down with flu like symptoms. Long story short, 5 years of searching finally led me to a rheumotologist who sent me to UCLA for surgery. I had a ruptured implant and after removal had to be reconstructed to replace the silicone filled tissue which was reconstructed from my own tissue from my rib area. I was left with fibromyalgia, Reynauds and atypical connective tissue disease diagnosis. I improved so much after removal, and changed jobs in my need to adjust to the fibromyalgia. I was fine for 15 years knowing to pace myself. Then I was injured at work requiring back and wrist surgery. I have had a major change in my symptoms. I have always had the dry eye and mouth but it has become worse and was diagnosed with sicca syndrome. It was noted I had a malar rash several times. However, now I can't be out in the sun without getting weak and sick. I have incredible sweats. I get the big ring rashes, licus platis (something like that) I have elevated liver enzymes, blurry vision,(loss of vision in one eye for a few minutes) multiple drug allergies, body cramping, numbness, tingling. multiple calcifications in my brain that can't be identified, chest pains, GERD, numerous bruises on my legs,bladder spasms, sinus tachycardia, rsd, was anemic, very dry skin, swollen ankles, joint pain, vein in neck swells, just to name a few symptoms that I can remember.
This dr says I do not have an autoimmune disease. Won't do a skin biopsy, says a lip biopsy for sjogren's requires specialty people and Kaiser doesn't have them. So he says I just have alot of symptoms and have just gone to alot of specialists. He offered me neurontin but I asked him for what? I dont have a diagnosis. I said I read that an ANA is not always positive and he said it is VERY rare and he goes to lectures. Give me a break.

 
Old 07-21-2010, 04:07 AM   #8
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Re: Just Curious, Lupus with Negative ANA

Mel, hi. What do your rash lesions look & feel like? For about 4 years, mine were red raised bumps resembling plump mosquito bites, but they didn't itch. Then same bumps would reappear, expand into perfect circles with clear centers, then the borders gradually expanded outward losing circularity. Then they'd fade, without scarring or depigmenting.

Mine were on sun-exposed areas of upper arms & back. I had about 4 batches per year, gradually worsening. By the end, I had about 3 rash batches overlapping. As the rashes were "on the rise" is when I felt the worst overall (bladder, GI misery, fatigue, joint pain, tingling, migraines, etc.)

Rash was diagnosed by a dermatopathologist as subacute cutaneous lupus erythematosus, annular form (abbreviated SCLE). [BTW, there's another form of SCLE called papulosquamous (or psoriasiform), that looks very different, a lot like psoriasis.] This dr. stated the obvious: that no one, not even a dr., can tell for sure what certain rashes are without a skin biopsy; and for this rash, ALSO special immune stain tests that revealed deposits of immune "junk" between the dermal & epidermal layers of skin.

My drs. said SCLE rashes are associated with the anti-Ro antibody, which is seen in Sjogren's, lupus, and certain complement deficiencies.

Where people with this rash fall on the lupus spectrum: My drs. said many remain "subacute", but some can indeed experience major organ involvement, including the worst problems seen in lupus = kidney, CNS, etc.

Why ANA can remain negative: it's suspected that in some anti-Ro people, anti-Ro "masks" the ANA findings.

Finally, they said people with anti-Ro may be the most photosensitive of all lupus, thus almost always must avoid UV exposure, including tanning beds. Meaning there's no known correlation with implants... it's SUN that's the known trigger.

If this descripion of SCLE annular form rash seems to be in the ballpark, perhaps you can discuss with your RESISTANT dr., who hopefully will then refer you to a dermatologist or dermatopathologist! And aren't health plans such as yours legally required to have a complaint procedure, where patients can ask a higher-up to review your case and assign you to different doctors?

Of course I'm only a patient, but I hope something above helps. I had a MISERABLE time getting answers and wouldn't wish that on anyone. Post more when you can, OK? Sending you my best wishes & encouragement, Vee

 
Old 07-21-2010, 09:53 AM   #9
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Re: Just Curious, Lupus with Negative ANA

Hi Vee, thank you for your answer. The first time I had a rash my dr thought it was shingles but it didn't hurt. They are oval ring like, almost like the Milky Way. They usually show up on my back though I have had them elsewhere, even when I am not near the sun. If I am in the sun I get like little white blisters and I also get red vein like marks in circular patterns. I also have a *****ly like rash that is constantly on my leg. I showed the rheumotologist my leg and pictures of the other rashes. He just looked at them and then in my mouth. I see a dermatologist outside of Kaiser who is treating my rosacia. I am going to ask him next time I see him, but I will also ask my primary dr to be referred to one of their dermatologists. I am having a hysterectomy next week so all of this will have to be on the back burner for a bit.
I also forgot to mention I have weakness, tremors, osteroporosis, and lots of GI pain. Part of the deal in the hysterectomy was also taking out my appendix. No one can believe I was able to get Kaiser to allow surgery since everything was negative. It was kind of freaky that after my dr said he was referring me for surgery, an ovarian cyst suddenly grew and so now everything is REALLY justified. lol.
I have been pushing with Kaiser and even though the wheels are slow have made progress.
I just see there are so many other tests besides the ANA and the sjogren's blood test. While I understand a small percentage of people test negative, I could be part of that group. At least don't pass off my symptoms

 
Old 07-21-2010, 10:11 AM   #10
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Re: Just Curious, Lupus with Negative ANA

Since I am negative ANA, this may be the wrong question to ask here, but if you get hot, do you feel sick like your are going to panic if you don't drink a ton of water that very minute?

 
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