Diagnosis questions

[dlrfoto]

Hi There-
I have had two positive ANA(HEP-2 might say HBP-2,,can't quite read it) tests, one was in April with a titer of 1:640 and the other one was in June with a titer of 1:1280.  That rhymatologist said he was confused given some of my other test results that were inconsistent with Lupus.  He sent me to a lupus specialist and she ran a bunch of tests including something that was called ANACHOICE SCR, W/REFL IFA ANACHOiCE SCREEN which came back negative.  Does anyone know if that's the same test?  If so, isn't it weird to have a high positive one time and only about 2 weeks later have a negative? Maybe she didn't rerun the basic ANA test???  Although, she seems to have rerun the others so I don't know why she wouldn'd rerun that one.

I also have elevated counts on C3, C4 and C-reactive proteins, calcium, WBC and platelets (which has been elevated since last November, maybe longer...I know low counts are generally what shows up in Lupus) and a low glucose count (that's something new although I suspect I hadn't eaten for awhile and my blood sugar was down which I think I'm prone to).

My symptoms are muscle and joint pain, weakness, fatigue, achy and stiff.  Basic flu like stuff. Memory and concentration problems which I go back and forth between thinking it's just the normal aging process to...No, something's wrong. No temperature. No specific rash, though the doctor said I had some malar erythema. I have always had a problem if I am in the sun too long, it just sort of zaps my energy, but I always thought this was true for everyone.(Being fair and blue eyed doesn't help) Shortness of breath, not where I'm panting but like I can't get enough air so about every 5 minutes I take a very deep breath and that feels a bit uncomfortable in my upper back, not really painful, just there.

I'm seeing the doctor Friday to followup and I'm sure she'll tell me what all the tests mean but I just wanted to hear first hand from some of you what your experiences have been.

The first time I saw the lupus specialist she was leaning away from Lupus and more toward Undifferentiated connective tissue disorder which seems like such a vague dx sort of like fibromyalgia which BTW I was dx with in 2002.

Thanks for reading this and for any help you can send my way.
Best,
Donna

P.S. I am on hydrochlorathiazide for High blood pressure and Fenofibrate for high triglycerides and high cholesterol. and take a vit D supplement for a vit D deficiency. I've recently, within the last couple of months, stopped taking Lexapro (for depression), Analapril (for high blood pressure) and estrogen (HRT) because I thought I was having side effects that could be the contributing/causing my symptoms and frankly when you're taking so many medications it's hard to sort out anything.

[smittygirl]

Welcome to the forum, just read your post and I wanted to make a quick comment about the Plaquenil,  TX is right about there being alternative drugs if you can't tolerate it.  I went through 4 doc's and many meds before being properly dx, I could not tolerate the Plaquenil either.   Every rheumy has their "personal favorite" as far as what to prescribe.  As TX said, please keep posting and let us know how you are doing, it can be a long process because so many diseases mimic each other.  Don't give up, be your own advocate, get and keep a file of all your blood tests.  We are here for you!

Sue
smittygirl

[txsilver]

Sounds like you have a fabulous doctor and I am thrilled for you.  The doctor/patient relationship is key to successful treatment.  
If slowly building up to the full dose of Plaquenil does not work, there are alternatives out there.  Plaquenil does seem to be preferred, though, as it has many benefits (according to my rheummy.)
Do let us know about your thyroid.  I completely understand hoping for a positive result.  It is nice if you can get diagnosed with something that can be fixed!  
Thank you for letting us know how you are doing and please post again!

[dlrfoto]

Hi txsilver and tomsgirl-

I just wanted to thank you both for your support and to let you know my apt. on Friday went well. ("well" in that the doctor listens to me and even says "that's a very good question" when I ask her things rather than making me feel like I'm bothering her which has been my experience with some of the doctors I've seen in the past. She's also come up with a plan)

She dx me with undifferentiated Connective Tissue disease as I suspected she would. Not enough criteria to qualify as Lupus. She said there was definitely something going on with my immune system.

She is starting me on Plaquanil which was previously prescribed a few months ago by my last Rheumatologist. At that time, I got extremely sick 2 days after starting it. Doubled over on the floor feeling like I wanted to throw up, go to the bathroom and passout all at once kind of pain. (mostly stomach pain but it radiated through out my whole torso) All the color drained out of me and I broke out in a drenching cold sweat. It lasted less than an hour hour but it felt like an eternity. I felt completely wiped out after. It was very scary. I was about to call 911. Anyhow, my new Dr. knows about that little episode and insists that if we start building up slowly to 400mg daily I am less likely to experience any side effects. I am starting out with only 50 mg and increasing 50 mg a week so it will take me 2 months to get to the prescribed dosage. I hear it can take as long as 5 months to get the full benefit of the drug.  

Concerning my elevated calcium level...I got her to do a PTH (parathyroid harmone) blood test because if that's elevated too I most likely have a parathyroid problem. I know this might sound funny but I'm actually hoping I do because that could account for a lot of my symptoms and it can be fixed! If it isn't elevated we'll just repeat the calium test in two months when I see her next.

She also sent me to get a lung x-ray when I reminded her about ny breathing problems.

As for my ANA results...I think it's pretty interesting that after I stopped taking analapril (High blood pressure meds) my ANA went back to negative after being so positive 1:1280. She didn't really comment on the possible connection. She just said the ANA results often fluctuate.

She and I agree that I can stay off High Blood pressure meds since starting another new med along with the plaquanil might confuse us. My blood pressure was around 140/90. I promised I would diet and exercise which I know I should be doing regardless but you know how hard that is when you're not feeling well.

Well I think I caught you up. Feel like I just wrote half a novel  

Thanks again for listening and commenting. Please let me know how you are doing.
Best-
Donna

[txsilver]

Glad the two of you are here for each other!  We are here for both of you, too.  
The tests can be confusing.  There are different tests that are done.  A basic screening may be done to determine where to look deeper (like at lupus) and additional testing may reveal that you do not have lupus.  Sometimes your test results change from test to test.  Other times you will learn you test positive for something you don't have and negartive for something you do.
I look at labs as indicators.  It is the combination of labs and symptoms that bring diagnosis.  
I too was diagnosed with fibromyalgia years ago.  I think that is common in the early stages of other autoimmune diseases.  Keep pursuing a diagnosis and being your own advocate.  Sometimes you have to see several rheummys before you find the one who is interested in your case and works well with you.
Good luck!

[TomzGirl]

Dpnna:

First and foremost..hang in there.  I am waiting for test results as we speak.  I had a positive ANA screen and sent to a rheumy.  He ran a gammit of tests including all the ones you mentioned above.  I have the EXACT symptoms you have and suffer each day.  When I went to see the specialist he said he needed the test results before he would say anything.  He also told me that it will be a long haul with this and that I will probably be seeing him every 2 months.  I think it is just nuts to have to wait like this....

I had to call him today...still waiting for a call back...with a new symptom; tingling in my legs.  That is enough to drive you straight up a wall, trust me.

I do not like the work undifferentated disorder...what does that mean?  That means that they know there is something wrong, it just has not presented itself yet.  Unfortunately, lupus can be exactly like that!  I know a person who has it and she took 3 years before they would say yes, it is lupus.  I also know a person who had be told they have lupus and then medicated for it...then 2 years later told she did not.  This is just an odd diease that, unfortunatley, rears its ugly head and we just do not know when....

I went from training for another marathon to one day sickly and not able to run 2 miles let alone 25 like I was the week before.  I just do not get it.  It is a wait and see game.

I wish you the best of luck with this journey.  Please keep me posted on how you are doing and what they say on Friday.

Kristina