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Old 03-10-2010, 10:35 AM   #1
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Question Can someone help me? I'm confused about labwork results

I had posted this question on a different board and I was told to come here, post, and ask help from "VeeJ"?

Anyway...I initially went to my doctor because I had a myriad of weird symptoms (which I thought was all hormonal/thyroid related) and she told me to come in and get a physical. My issues were/are: itchy itchy scalp, fatigue (beyond exhaustion), ringing in my ears, severe depression (but not from any real issues, it just shows up for no reason), insomnia, and ONE joint that hurt (my top joint, right ring finger, hurts for over a month). Everything EXCEPT the joint problem has been occurring with regularity, cyclically, for over 10 years.

Oddly, I had noticed in the past that I kept going in for bloodwork every February with the same complaints. All my blood work comes back normal..thyroid, hormones, hemoglobin, sed rate (this has showed as a 2 since forever), ANA. My CRP is always very very low...<.10 (range is <.80mg/dl).

Last week, the blood test showed the CRP as raised slightly, sed rate still 2(, or =20 is the normal range), the RF factor 6 (range is normal is <14), and a new test ANACHOICE SPECIFIC AB CASCADING RELFEX which showed positive (normal is negative). This was followed by antibody testing in which everything was normal except for RNP which was 2.1 POS (range is <1.0 Neg AI).

I was told to go to a rheumatologist who then says I have "mixed connective tissue disease and systemic lupus erythematosus."

He continually asked about symptoms of Lupus. I don't have symptoms of Lupus...I've never had symptoms of Lupus.

I would agree that I have slight arthritis if you even want to call it that due to the one joint hurting...but then I could have jammed it or something, too.

HOWEVER, I do not in any way believe I have Lupus.

Could someone please explain to me, from what small test results I was able to give, how I can all of a sudden have Lupus?? We don't have any diseases in my family...no cancer, diabetes, autoimmune, allergies, high blood pressure, kidney disease....for goodness sakes none of us drink, smoke or take any kind of drugs (prescribed or otherwise). Please please please...help me to understand what the heck is going on here. (I don't believe in the theory of spontaneous combustion.... )

And, not only was I handed this diagnosis on a platter, when I asked "Ok, so what do I need to do now? Have bloodwork occasionally? Make a checkup appointment?" I was told "Oh. There's nothing to be done. Just call me if anything changes." HUH?? I don't believe you can tell someone they have Lupus and then they don't need to do anything about it.

 
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Old 03-10-2010, 02:36 PM   #2
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Re: Can someone help me? I'm confused about labwork results

Disclaimer: I am fairly new to all this and learning as much as i can myself. I was only diagnosed a few months ago but have been seeing a rheum/derm/neuro/ortho/and urologis for diagnostic testing for about 8 months with SLE and RA as the working diagnosis.

From what I have gathered in my research, Lupus has many presentations and levels of severity depending on the organ or organs that it is impacting. I cannot evaluate your labs as I honestly don't know that much about it yet and if you feel the diagnosis is incorrect I think it's always a good idea to get a second opinion and then some. There are other diseases that must be ruled out depending on your symptoms, and I do think some of your symptoms are also those seen in lupus- though not exclusive to lupus obviously.

The best advice I can give is to do as much research as you can and be your own advocate. If you aren't satisfied with the diagnosis, listen to your inner voice and pursue a second opinion, etc. I'm sorry I'm not more helpful, but as a relative newcomer to auto immune processes I know how frustrating it can be trying to understand whats going on inside the body. Wishing you the best.

 
Old 03-10-2010, 02:57 PM   #3
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Re: Can someone help me? I'm confused about labwork results

Lolo, hi & welcome. First, I'm only a patient, so please read in that light, OK? Next, look at the "sticky posts" at the top of the thread list. They're permanent info posts & are good because they introduce you slowly to a complex subject.

In lupus & close cousins, the immune system malfunctions and creates unwanted antibodies that attack your own body. My understanding is that anti-RNP, the one you tested positive for, is seen both in lupus and Mixed Connective Tissue Disease (MCTD), a close cousin to lupus. To me, testing positive wouldn't mean one or the other or both; it would mean LOOK AT BOTH. Each has tis own diagnostic criteria, is what I mean.

But the big point here is that any detectable autoantiboy level is abnormal, as it means your body is attacking itself, at least a little. Effects range widely and could include constitutional (fatigue), pain, skin rashes, blood disorders, and damage to major organs (there's where things can get bad).

Whether or not you really have lupus, I couldn't say. A formal Dx is almost always based on meeting at least 4 of the 11 criteria in that one "sticky"; these may be met over time, meaning not necessarily all at once. But maybe the anti-RNP *alone* is enough to diagnose MCTD...? I don't know. In your shoes, I'd ask my rheumie to explain much more about anti-RNP!

As for symptoms, fatigue is at the very top of the list for lupus, and I'm betting for MCTD, too.

For the record, I also had awful fatigue for years, horrible flaky itchy scalp, ringing ears (painful), and moodiness---plus other things that went on for decades. I was the first person in my family Dx'ed with it, although I really wonder about my mother (heart & clotting problems, but she lived a long life despite). Lupus is thought to result from some combo of genetic and environmental factors. What you eat, drink, or don't aren't factors (alas). Sun can be a factor for many, though, because it can trigger flares.

Like you, I'd be baffled if told I had lupus but not given any treatment. The DOC for milder lupus cases is ususally Plaquenil (hydroxychloroquine), and I believe it's also prescribed for MCTD... BUT you'd have to ask about that. In your shoes, I'd want to try something that could alleviate fatigue---and also lessen the chances or "whatever it is" worsening. (Plaquenil has helped me!)

I'll quit here, to give you a chance to read the stickies, etc. I hope you post more when you can. Meanwhile, best wishes, sincerely, Vee

 
Old 03-10-2010, 03:23 PM   #4
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Re: Can someone help me? I'm confused about labwork results

Thank you so much for responding!

I AM looking into it more as I am completely baffled about it all. I have read, read, read, and read some more all over the internet. The ONLY "classic" symptom I have is the fatigue. It is unrelenting and has continued for at least the last 12 years. 12 years ago I had traveled with my husband to Australia. When there I got THE worst cold ever....like the worst case of mono, but never diagnosed as such. When I came home I had continual and exhaustive fatigue for many months after. I was told I had Chronic Fatigue, Lyme disease, Fibromyalgia, and I was crazy/depressed/confused. After literally sleepwalking through my life for about 2 years I told myself "You don't feel well, you don't sleep, get on with it." So, basically I did. But the fatigue has followed me along with horrible insomnia, ringing in my ears, and a throat and lymph glands that seem to swell like clockwork every month. I assumed it was hormonal related...I'm 45 now, had a hysterectomy....

I don't have rashes or fevers or weightloss or headaches or blue fingers or swollen fingers...none of them. Which is why I don't get that this is what it is. As for the sun, I tan...tan pretty darkly and immediately, I've never burned or had a rash from it.

But, something you said has peeked my interest. You said your mother has clotting issues. SO DOES MINE. She suffered a stroke, survived, but had surgery on her carotid artery. She has always had issues with clotting...she had a pulmonary embolism with one of her pregnancies.

Its not so much that I'm not happy with the diagnosis...well, I'm not...BUT, I cannot see a connection, I cannot fathom where in the world this came from.

Also, you are the first person (and I mean the very first) that has said "fatigue, ear ringing, itchy scalp and moodiness" all in the same sentence just like I said. No one else has said it. And because no one else has said it, I've gone to an ENT for the ears, a gastroenterologist for the throat, a dermatologist for the scalp, a gyn for the fatigue and moodiness. And by going to sep docs for each symptom they are going to give you THEIR specific diagnosis instead of a more overall look at how all the symptoms connect.

So, maybe I do have this issue...maybe not...but things are starting to fall together...maybe.. I'm going to have the test re-done by someone else and see where it goes from there. The rheumatologist I saw...oy....when I asked questions about symptoms or connections, he couldn't give me an answer even when I had found an answer online. So, I need to find someone else because I'll run over him with info.

I'll read the stickies! I had started, but its overwhelming.

***Did you ever get the ear ringing to stop?? I would dearly LOVE to get this to stop***

Thank you!

Last edited by lolo3132; 03-10-2010 at 04:04 PM. Reason: additional question

 
Old 03-10-2010, 07:46 PM   #5
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Re: Can someone help me? I'm confused about labwork results

***Are receding gums/periodontal disease a symptom of Lupus/MCTD? Or a clue to Lupus/MCTD?

It is one of a few issues that I can't seem to figure out how I got it. My dentist can't figure it, the periodontist can't figure it out, and I can't figure it out. I am vigilant about my teet, never had cavaties, never wore braces, attend my appointments, floss, brush, etc.

Just wondered if maybe this would be an explanation.

 
Old 03-10-2010, 08:24 PM   #6
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Re: Can someone help me? I'm confused about labwork results

Lolo, from age 3 or 4, I had many problems, yet I NEVER connected them, nor did MANY doctors for many years, including during multiple hospitalizations. Then in early 40's, nose-dive: an episode similar to what you describe, in the summer, like mono or flu. From there on, everything previous worsened.

If your current rheumie can't explain or follow up on your results = positive ANA and positive anti-RNP---oh, YES, do keep looking!

My ear ringing stopped when I started Plaquenil & stopped sun exposure and step aerobics. Sun and energetic movement were triggers for my ear ringing, I suspect. While I hate what I had to give up, there are many worse things!

I hope you get fuller answers & help soon. Keep posting, OK? Warm wishes, Vee

 
Old 03-11-2010, 05:10 AM   #7
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Re: Can someone help me? I'm confused about labwork results

Its so nice to have a little help...and to know that I'm not "crazy after all these years"...

I think the ear ringing has to do with acid reflux. I've only just now figured this out. I've had the ear ringing for a long long time. And, its gotten louder over time. I have racked my brain trying to figure out what it is....first I thought it was certain foods because I noticed an increase in volume with particular foods, namely ones I know for a fact I am allergic/intolerant to. So, I eliminated foods. But then I noticed that it increased any time I swallowed food or drink regardless of what I ate. In the meantime I had a weird throat issue that came and went. My throat seemed to feel like it was tightening and the glands on either side would get swollen so you could see them and I would go hoarse.

Just yesterday, on a semi-whim (i saw that GERD might be an issue for Lupus??), I went and got an acid reflux product. Almost instantly the ringing stopped and my throat swelling was relieved. So, guess I have to get it looked at.

**Question...has anyone noticed an increase in food intolerances with Lupus? Seems over time I have had to take a lot of foods off my "can eat" list...sometimes it seems as if I am left with water and water.**

**Question...is insomnia part of the symptoms? Or maybe a lack of an explanation for why I have insomnia and nothing seems to resolve it**

**Question...our family has a predisposition to react badly and opposite to many prescription drugs. Is this an issue faced by Lupus sufferers?**

**Question...has anyone notice in regards to oral health, receding gums, loss of color in teeth, and what I can only describe as emaciated gums?? My gums don't look full if that makes any sense. As much as I take care of my teeth and gums I have problems no seems to be able to figure out. I had a bone scan done a few years ago because of it, but I didn't show any osteoporosis.**

If I can start fitting the pieces together it will help. The questions I ask have been unresolved for a long time and I've been very frustrated with it all. No one else in my family has these issues.

 
Old 03-11-2010, 07:14 AM   #8
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Re: Can someone help me? I'm confused about labwork results

Lolo, I had episodes of painful esophageal tightening since childhood, like being strangled from the inside out. Very infrequent now, compared to before Dx & meds. (I have no idea what causes it.)

As for food, ha! For over 2 decades, multiple gastroenterologists thought I had severe irritable bowel syndrome &/or that I was a total head case. I took Librax for years; it didn't help. They had me on very restricted diets; those didn't help either. Amazingly, my GI problems stopped cold when I started Plaquenil. But there are still foods my body hates: fatty, rich, fried, red meat, eggplant, etc., so I just avoid these.

In the final 4 yrs. before I was Dx'ed, despite being ridiculously tired, I had frequent insomnia. That also receded.

If you scan hardcovers (library or bookstore), you'll be shocked to see the wide variety of things seen in lupus & similar conditions. Problem is, many aren't "specific". But your positive anti-RNP result should mean a lot to a good rheumatologist, I'd think... Stay in touch, OK? Best wishes, Vee

 
Old 03-11-2010, 07:43 AM   #9
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Re: Can someone help me? I'm confused about labwork results

have an appointment with a different arthritis specialist next week. the nurse was sooo very very very nice and answered all my questions. what a difference the front desk person can make,huh. they are going to re-run the bloodwork, twice if they have to if that will make me feel more comfortable.

the specialist is young and specializes in MCTD, Lupus, and Scleroderma, etc., because his grandmother had it. so, it looks like I picked the right one!

we'll go from there....i'll let you know.....

(things you're telling me are now making things fall into place.......gosh it took such a long time!....food issues, sleep issues, ear/throat issues....making some sense out of it now...)

Oh, I also ordered 4 books from the library...just waiting to get notification that they are in....

THANK YOU

Last edited by lolo3132; 03-11-2010 at 07:46 AM. Reason: additional info

 
Old 03-11-2010, 09:36 AM   #10
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Re: Can someone help me? I'm confused about labwork results

Thought of something else....

Can/does surgery, or major car accident....basically anything that causes major trauma....would that be a TRIGGER?

With MCTD or Lupus or Scleroderma, is there a problem with excessive scar/tissue buildup (both internal and external) from a surgery or injury? In other words could this be a clue you have an autoimmune disorder?

Does the RH factor of your blood determine if you are prone to autoimmune disease?

Last edited by lolo3132; 03-11-2010 at 01:33 PM. Reason: additional info

 
Old 03-11-2010, 03:13 PM   #11
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Re: Can someone help me? I'm confused about labwork results

Quote:
Originally Posted by lolo3132 View Post
Thought of something else....

Can/does surgery, or major car accident....basically anything that causes major trauma....would that be a TRIGGER?
Butting in- My Rheum said sometimes major trauma can set the process into an active phase. Many of my pain related symptoms followed after an injury I received during a rollerderby bout when I took a big hit from someone weighing probably 3 time what I did and sending me flying through the air landing on my tailbone and hips. I wasn't sure I was going to even be able to walk but paramedics checked me for concussion (head hit floor hard but helmet was secure) and brought me to my feet. I was in pain but at that point I tried to be tough and push through it. I didn;t even go to my doc over the accident until after a month I kept feeing awful and actually had episode of horrible vertigo and completely passed out hitting my head again on pavement and waking up to awful vomiting. Yet no doctor could explain what had happened to me. I wish I would have been more persistent with my PCP back at that time.

After all this I kept getting sicker- I always had bronchitis, sinus problems, strep throat, tonsillitis, chronic cystitis, etc etc. the fatigue was there but got unbearable over time.

I'm not positive but as my rheum told me sometimes we are predisposed or may have a process already going on that isn't quite as active and when we experience a trauma it may set the process into a more active mode. Looking back now I know I have had may symptoms come and go over the years but never had a doctor who showed any interest in anything other than treating the specific problem I was being seen for that day.

 
Old 03-11-2010, 03:51 PM   #12
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Re: Can someone help me? I'm confused about labwork results

You're not butting in...Others can chime in......I was asking cause I'm trying to piece things together to get an understanding. In my life, just in the last 10 years, I was in two major car accidents, had extreme family issues, and had foot surgery, and had a hysterectomy 5 years prior to all this. So, I'm wondering if things have just cascaded into this. I started out with something that probably was sever mono...and I've probably never had appropriate time to recover from anything really, just when one gets done something else starts up.

The question about extreme scarring is because I have a tendency to overproduce scar tissue both internally and externally. In fact, my foot doctor said when she was starting the surgery she had a great deal of trouble getting tissue to let go of the bone. And I took 3 times as long to heal up. What took most people 6 weeks to heal and recover from took me 10 months. She said she'd never seen anything like it. So, I'm wondering if that is part of it all too...maybe an indicator.

It makes sense if you have trauma that it throws things into overdrive. Thanks for your input.

 
Old 03-11-2010, 05:50 PM   #13
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Re: Can someone help me? I'm confused about labwork results

Here's a question....I'm full of them....

On my blood work it states (because my RNP was 2.1 POS) "RNP antibody is found in patients with mixed connective tissue disease in high titer. This antibody may also be seen in SLE and other connective tissue diseases..."

I've looked and looked. First, unlike the specific autoimmune diseases, I cannot find a specific list of diagnostic criteria. All I find is that you will have symptoms of each of them/some of them.

So, if the only symptom I have is FATIGUE, which seems to fall under them all, then how can I fall into the Lupus category?? The doctor kept harping on Lupus and I don't get it. I definitely don't have Raynaud's or Scleroderma...I still don't see the Lupus connection. So help me wrap my brain around it....at least point me in the direction of a diagnostic list........

I can see that I might have a little arthritis...I am getting older and things are starting to creak and groan. But RA?? I don't see it. I have fatigue...but that could be any manner of things....can anyone else feel/see my frustration???

 
Old 03-12-2010, 03:00 PM   #14
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Exclamation Re: Can someone help me? I'm confused about labwork results

I think I've found the connection... When my second son was born, he was very very jaundiced. (both my boys were jaundiced at birth, by my second was worse than his older brother.) After 6 months of blood testing, and then subsequent blood tests on my husband and myself, my son was diagnosed with hemolytic anemia. At the time, I did not have the presence of mind to ask for a hard copy of the lab work. We occasionally still have to get his blood checked. He hasn't had any problems, and last year the hematologist actually told us she didn't think he ever had hemolytic anemia. Needless to say I was very angry at this...omg all the stress and worry...anyway, on a whim I called the nurse yesterday and asked her to dig up the original lab results. (This was a big wish as the original lab results are now 18 years old, so wasn't sure if they would still be available.) I got the results emailed to me. Right there on the paper was "...these results may be due to spherocytosis of any cause including immune hemolytic anemia...." My heart sunk into my feet.

So...which came first? SLE or hemolytic anemia??? And seeing as how I've survived 18 years with no other symptom other than fatigue, is this the worst it will ever get??

 
Old 03-18-2010, 04:23 AM   #15
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Re: Can someone help me? I'm confused about labwork results

Your symptoms sound very much like Lyme Disease to me...please, have it checked...the blood tests aren't always accurate for Lyme, so try and find a doc that knows something about the disease.

 
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