Diagnosed or not poll?

LUPUS - 57.7%
UCTD - 7.7%
LUPUS - 0.0%

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Regular Member

Date Joined Aug 2006
Total Posts : 142
   Posted 5/19/2008 1:14 AM (GMT -6)   
So I am very curious how many of us are OFFICIALLY diagnosed with Lupus or Sjogerns or another specific autoimmune disease and how many are still in Limbo or have had that dx of Fibro. It seems like so many of us are having symptoms and some sort of disease process and are unable to get diagnosed. Even Fibro seems to be an unknown dx that they just label some people with because they arent sure what to call it. I was just thinking about how the first rhemie I saw said that the ANA is only negative in 0.01% of patients if not less. I want to know how this is possible, looking at this board it doesnt seem true! There has to be a higher percentage than that.

So I am just curious, I think alot of others might be too.

***Not sure why it listed some things twice. I cant go back and fix it... I guess it will work the same.



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

Post Edited (Snickerdoodle) : 5/19/2008 12:21:31 AM (GMT-6)

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 5/19/2008 9:08 AM (GMT -6)   
I tried clicking on a few of them, but can only register with one selection!  I am officially diagnosed with a bunch of CRAP-OLA...
Lupus, sjogrens, raynauds, fibromyalgia, oh heck, it's all in my signature line - LOL! 
Yeah, that percentage of ANA is probably higher.  I think the majority of us here were diagnosed with a high positive ANA (1:640 or higher).  Some of us do get the diagnosis with a negative one, but they will have massive amounts of the 11 criteria to back up the diagnosis.  This disease is a gong show.  It never makes sense, and it's always changing!!!  BAH!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 5/19/2008 9:59 AM (GMT -6)   
I could only pick one but have a ton of dxes too
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, Sjögren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 5/19/2008 12:30 PM (GMT -6)   

Hi Mellissa, I put no official DX because you didn't put down one that said I am perfectly healthy it's the rest of the world that's sick! LOL. tongue


God Bless
Depends on which rheumy you ask! stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Brovana, Pulmacort,zythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, aciphex,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 5/19/2008 3:01 PM (GMT -6)   
Hi Melissa,

I think your doctor meant that on 1% of Lupans have a negative ANA. I really think the number is higher, if you look at Dr. Graham Hughes research gives a lot of info about this. You can "Google" him, he is in London I believe.

My Rheumy says that any given blood test is only a 'snapshot' of our health. He said that we actually need to see the 'trend' of our bloodwork. If you are tested while you are receiving cerain meds, they can help you ANA go down or to negative.

The poles only allow one selection so there is no way to do a great pole like you tried to set up. sorry.


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 Jan 2005
Total Posts : 659
   Posted 5/19/2008 4:50 PM (GMT -6)   

Hi Melissa,

The only positive lab I have is an ANA of 1:1280. However, I have many symptoms and my kidney biopsy basically came back as lupus. Therefore, my DX came easily and I have been given a DX of lupus by 3 different nephrologists and a rheumatologist. I know it can be frustrating but hang in there.


DX: Kidney Disease, (? Lupus Nephritis) 2002
DX: Raynaud's Phenomenon and Lupus (SLE & Class V Lupus Nephritis) 2005
DX: Anorexia and Hypokalemia 2006
meds: plaquenil, amiloride, klor-con

Veteran Member

Date Joined Apr 2006
Total Posts : 1344
   Posted 5/19/2008 5:32 PM (GMT -6)   
Originally diagnosed as lupus but after 2 months it was changed to MCTD which includes lupus.  I would have been glad if they stopped at lupus....didn't need the complications of the others as well.
Some of us have in inflammatory muscle disease like polymyositis or dermatomyositis as well.  I have PM, scleroderma, and lupus....a threefer.
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, 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

Veteran Member

Date Joined Dec 2007
Total Posts : 2113
   Posted 5/19/2008 6:16 PM (GMT -6)   
These autoimmune diseases overlap themselves so much that sometimes I think its a guess and of cource we tend to collect diagnosis the longer our immune systems are screwed up.

Veteran Member

Date Joined Jun 2005
Total Posts : 541
   Posted 5/20/2008 12:33 AM (GMT -6)   
I have MCTD also.  I have Raynauds, Fibromyalgia, Lupus.  My ANA was positive but when I began taking plaquenil it went back to normal.  
Mary Ann
** MCTD,Fibromyalgia,Raynaud's June 2005
**Sleep Apnea - February 2006
**Pulmonary stenosis, High blood pressure, IBS, degenerative disc disease, vertigo
**Meds:  Plaquenil, MTX, Lyrica, Folic Acid, Metoprolol, Lotrel, Vicodin
 "No matter what happens, God is in control.  He is God, I am not, what a relief!"

Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 5/20/2008 12:57 AM (GMT -6)   
I also have a lupus-like autoimmune condition that is to date nameless and fibromyalgia. The fibro diagnosis came first, before any testing for real disease was done and it was difficult for anyone to test me further once that was in my chart. For a last case diagnosis it sure comes up as a first line diagnosis with women. Men are never diagnosed with fibro. That would be an interesting poll.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn

Regular Member

Date Joined Aug 2006
Total Posts : 142
   Posted 5/20/2008 11:57 PM (GMT -6)   
 I never thought about it but I think you are right, men are never dx with fibro. I have mentioned before that I work at a hospital, and am a nursing student. For those of you who have been diagnosed with fibro, most health care professionals look down on that diagnosis. Alot of doctors throw that diagnosis at people who keep whining about aches and pains, like most of us. If you research Fibro, it does not cause imflamatory markers to be elevated. So technically if you have a high sed rate or CRP do you have fibro?? They keep looking at fibro as being caused by some sort of nerve or brain impulse telling the body it is having pain. It is very hard for docs and nurses to tell if a patient is having pain or not. I have seen several people with a diagnosis of fibro who just seem to be drug seekers. It is a shame for those of us who cannot get diagnosed or have a fibro dx and really are suffering. So just a word of advice I wanted to sneak in there. If you have a dx of fibro be careful who you tell. It immediately raises flags. I have wanted to bring that whole thing up for a while, but I am sure it will cause alot of contoversy.
Thanks to everyone for there input on thier diagnosis. I am in no hurry to get diagnosed honestly. I am being treated the same as if I had Lupus. Insurance companies, and even where you work have several prejudices against autoimmune disease anyhow.So maybe its better not to have an official diagnosis. So until they find some other disease that we are probably all suffering from.......plaquenil and celebrex will have to work.
Dx: UCTD,Raynaud's,iron deficientcy anemia,proteinuria
Rx: Multi-rec folic 500, Celebrex 200 mg, Plaquenil 400mg, Ultram PRN

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 5/21/2008 12:02 AM (GMT -6)   
I despise the fibro dx because as soon as a doctor writes that on your chart you suddenly end up being treated like you are making it all up- for me I had no dx when they began treating me like that but my grandma got labeled with fibro and a lot of lab work indicative of lupus got ignored. I don't even have enough of the pressure points for the official dx criteria and was labeled with it.
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, Sjögren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec

Veteran Member

Date Joined May 2005
Total Posts : 7720
   Posted 5/21/2008 7:17 AM (GMT -6)   
I know at least 2 men diagnosed with fibro.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

Regular Member

Date Joined Mar 2008
Total Posts : 20
   Posted 5/21/2008 7:42 AM (GMT -6)   

As of yesterday's anti-dsDNA results and the pretty pictures I showed the rheumy of my butterfly rash, I am diagnosed. Dandy.

I feel pretty good most days. I'm in great shape, actually. But I am more bummed about this than I expected to be. Throughout this process, I've been expecting the rheumy to kick me out as a poser. Was counting on it, actually.


Often she hid at the sight of wild beasts,
forgetting what she was; and, though
herself a bear, shuddered at sight of other bears.
   -- Ovid, Metamorphoses

Regular Member

Date Joined Dec 2006
Total Posts : 102
   Posted 5/21/2008 10:46 PM (GMT -6)   
After four years, I'm still waiting for an official diagnosis.

The first two rheumies said I had lupus. When the second one wanted to leave me on prednisone indefinitely, I found another doctor. I really like this one; I've been seeing her for the past two years. She is NOT convinced it's lupus, but also doesn't know exactly what is going on. I have a positive ANA, high CRP, high sed rate, anticardiolipin antibodies, some other anti-something antibody that I can't remember the name of, joint pain, frequent flares, exhaustion, mouth sores, eye inflammation, sun sensitivity.

I still tell people I have lupus because it's so much easier than explaining all of that! And if it isn't actual LUPUS, it's darn close enough for me! LOL
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

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 5/23/2008 3:24 PM (GMT -6)   
My rheumy says I have lupus, but for now the written diagnosis in my chart is UCTD. That's fine with me because I'm being treated the same as far as meds go and it looks better when you are trying to get things like life insurance. I looked at a life insurance form the other day and you had to check a box if you have been diagnosed with lupus, but they didn't list any of the other connective tissue diseases.

I'm like Kari and tell people I have lupus because it's too hard to go into the whole story about what UCTD is and why it's written in my chart instead of lupus. So many people aren't familiar with lupus as it is, and UCTD is even less known.
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; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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