New to this forum and to an informal Lupus diagnosis

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Paso
New Member


Date Joined Jan 2012
Total Posts : 4
   Posted 1/14/2012 9:35 PM (GMT -6)   
Hi,
I have had 2 blood tests come back positive:
ANA
ANA 12 Plus Profile, moderate positive for anti-ro ab

My PCP referred me to a Rheumatologist. Any opinions on what a moderate positive anti-ro ab might be?

Thank you.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/15/2012 3:38 PM (GMT -6)   
Sjögren syndrome scores positive with anti-ro ab.
Do you have dry mouth or dry eyes?
The amount and quality of saliva and tears produced decreases with Sjögren syndrome, leading to a characteristic dry mouth and dry eyes that are referred to as "sicca syndrome." Other mucous membranes may also dry out. Those with this condition often have a feeling of sand or grit in the eyes, swollen salivary glands, difficulty swallowing, and a decreased sense of taste.
Joy

AngelinaATF
Regular Member


Date Joined Jan 2012
Total Posts : 135
   Posted 1/15/2012 7:27 PM (GMT -6)   
Anti RO can still mean connective tissue disease - MCTD or SLE
Your Dr should be able to decipher or refer u to a Rheumatologist!
Any others symptoms?

Paso
New Member


Date Joined Jan 2012
Total Posts : 4
   Posted 1/15/2012 7:56 PM (GMT -6)   
Hi,
Thank you both for your input. My symptoms include:
fatigue
dry eyes
blood shot eyes, drops don't help
joint pain, head to toe
deep bone pain (like a growing pain, but I'm 43)
fatigue
good days and bad days
always cold, hands and feet like ice
butterfly rash on my face
vaginal dryness
digestive problems
nose bleeds
and more...

My RA Factor was negitive, WBC count off the chart high, RBC low...not sure what other results might be pertinent. If you ask I can look at my blood work results.

My Rheumatologist appointment is Feb 29, first available. It is so incredibly difficult to wait, the unknown, no label for what this is, nothing to focus on. This forum seems like the right place to be - I read lots of posts last night and felt at home. I connected with peoples stories.

Thank you again for your feedback. I look forward to learning a lot from this forum.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/15/2012 9:18 PM (GMT -6)   
What's your ANA titers? Did it say what pattern of ANA?
Did anything else score high or abnormal?
Joy

Paso
New Member


Date Joined Jan 2012
Total Posts : 4
   Posted 1/15/2012 9:40 PM (GMT -6)   
My ANA Titer 1:40 H
Pattern Atypical Speckled

Vitamin D is Low 24 (norm 30-100)

Lipid Panel:
Cholesterol 180
Triglycerides 60
HDL 69 H
Chol/HDL 2.61 L
LDL 99

AngelinaATF
Regular Member


Date Joined Jan 2012
Total Posts : 135
   Posted 1/16/2012 12:27 AM (GMT -6)   
I know the wait is difficult - I waited 6 mos in the city we lived in when diagnosed & it affected everything bc I couldn't work in my condition! Hence, I quit my job which ended up to be the best thing in true world for me bc the stress of it was contributing to my disease (although then I was home w 2 toddlers which was HARD when one doesn't feel well. But in retrospect it was the best thing ever bc I learned to be a better mother & actually know my kids!).
As far as your labs, it often takes more than just labs to make the REAL-DEAL diagnosis & do not be surprised if it takes a few appointments w the Rheumatologist before they actually give u the DX (they like to meet w colleagues before writing it in stone -er.. computer icons these days :)
And although it sounds like Sjogrens, you have CLASSIC SYMPTOMS OF SLE (LUPUS). And w the labs..only Rheum can make that DX (sorry I know u want to know NOW!)
I hope you don't have SLE bc its a tough road but..I hope u find out quickly.
My ANA titer was quite high 1:640 when I initially was tested. Then it went down to 1:180 then to 1:80 - still positive. Its not always @the number so don't get too caught up on those. Symptoms are more indicative of disease- well, it's a COMBO of the 2 really!
Just try to be positive & strong! Call the Rheum & ask to.be put on their cancellation list & make it clear your up for appt ASAP. I'm sorry you are going thru this - I REALLY AM!

AngelinaATF
Regular Member


Date Joined Jan 2012
Total Posts : 135
   Posted 1/16/2012 12:41 AM (GMT -6)   
Oh I forgot also to mention @ your VITAMIN D level. Mine too was super low (like that of an 85 yo woman!) & this seems to be 1 of the Auto-immune disease "_TRIGGERS" so I'm sure you will be started on Vitamin D (prob rx-strength for 8 wks then OTC - over the counter strength thereafter). Also I noticed your WBC high which can be from physical or emotional stress (or even from prednisone) among a few things. I HOPE they put your puzzle together quickly! I am putting a prayer out there for you! Angelina

AngelinaATF
Regular Member


Date Joined Jan 2012
Total Posts : 135
   Posted 1/16/2012 12:51 AM (GMT -6)   
Also...meds? DO THEY HAVE U TAKING ANY MEDS?! U MUST BE IN PAIN & NEED SOMETHING! DO NOT SUFFER IN SILENCE! NOW THAT YOUR DR KNOWS U HAVE SOMETHING AUTO-IMMUNE THEY WILL GIVE U MEDS..
BUT U HAVE TO ASK! DO NOT FEEL BADLY @TAKING SOMETHING - THEY'VE GOT TO FIGURE OUT WHAT'S WRONG W YOU! ANG

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 1/16/2012 9:58 AM (GMT -6)   
Please don't worry, just make the rheumotologist appointment and let them make the decisions. Online advice and information does not substitute for real doctors who can observe you!

Please remember that only your doctor knows the total picture and that it is always best to let them figure out the diagnosis rather than telling them what you think it is.

Giving them your idea tends to limit what they consider and we really want them to use their training and experience to consider *all* of the possibilities. All the online information in the world simply doesn't substitute for medical school and the scores of patients they see!

Best wishes,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/16/2012 5:47 PM (GMT -6)   
Your doctor will be able to tell you the final diagnosis. Try not to worry too much now. He'll want to try different treatments to see if it helps you.
It took two trips to him before he started me on medication. Some of it takes awhile to kick in, too.
Welcome to the rollercoaster of autoimmune disorders! :)
Joy

Paso
New Member


Date Joined Jan 2012
Total Posts : 4
   Posted 1/17/2012 9:37 PM (GMT -6)   
Thank you for your suggestions.

At my last PCP doctor appointment she prescribed 4000 Vit D a day. My PCP didn't offer any pain medications although I did ask her for anything that would help with the joint pain and that I was extremely uncomfortable - that triggered her to do the ANA test...now I wait till the 2/29 Rheum appt.

Speaking up about how I feel is a new experience for me. I am not the type to openly complain to others about how I feel, this will be a big change for me. I have read in several places it is important to speak up because Lupus isn't so much a visual disease, meaning you look normal but don't feel that way. It is my nature to give so receiving help is a bit awkward.

Does anyone attend support meetings? Are they helpful?

I appreciate your feedback and ideas.
Have a great evening!

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 1/18/2012 8:42 AM (GMT -6)   
I was diagnosed in 2002 and attended a few support meetings right after that. I found them helpful, especially in getting info on local drs, but in the long run I've relied more on support from this forum.

Maybe you can call the Dr and get on the cancellation list in hopes of seeing someone sooner?
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

janita
New Member


Date Joined Jan 2012
Total Posts : 2
   Posted 1/18/2012 12:43 PM (GMT -6)   
I will be 41 next month. I started having troubles, tests, & problems since I was 18. I was having alot of pain in my knees when I was 28, so my family Dr. sent for an ANA test. It came back positive, but hasn't showed positive since. My tests for inflammation are usually on the higher side. I was diagnosed with fibromyalgia & possible Lupus. I have Raynauds, hiatel hernia, restless leg syndrome, GERD, fatigue, high cholesterol, low vitamin D (which I am taking prescription for), a start of arthritis had shown in my knee some years back, often get chest pains & shortness of breath, and migraines. When I was working I was always in pain. I would get to the point I could barely stand. I was sick so often and my concentration and memory was getting so bad, along with Pleurisy every year, so I had to stop working. I have tried different meds over the years, but usually have problems with side effects so I go off of them. My Rheum. put me on Methotrexate to see how I respond. I was nervous about side effects & long term problems, but tried it. I felt a slight improvement, but not enough to take the risk, so went off it. Within no time I got a swollen lymp node on the back of my neck and started to feel completely horrible. My family doc did blood work and found I had Epstein Barr. I was weak for months and had trouble recovering. The past couple years I have had terrible pain in my finger joints. Hard to write, clean, even hold an eating utensil at times. I told my Rhem. about the pain in my hands & all he does is look at them and say, "hmm." More recenetly I have had problems with pins and needles or numbness in arms, hands, legs, and feet, and a feeling of pulled muscles in my calves at times. I am going to see a Neurologist at the end of this month. Wish I had a definite name to my problem. Prayers to all of you.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 1/18/2012 1:40 PM (GMT -6)   
For Janita,

Your rheumy doesn't seem to be of much use. Can you get a second opinion from a rheumy who is active in your local chapter of www.lupus.org? Definitely something worth pursuing if the neurologist isn't helpful.

Lupus is usually diagnosed by a *combination* of symptoms and bloodwork, not by either alone. If you aren't getting your symptoms addressed, regardless of diagnosis or not, then keep on till you find a Dr than can help you.

Sometimes we have to try medications even when we aren't happy with possible side effects. Very often it's only 1 in 10000 who even have a side effect, but it's legalese they have to talk about. Some of these meds can perform miracles! Cellcept worked for me, others have had good results with Imuran or MTX.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde
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