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Old 09-19-2011, 04:28 PM   #1
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positive ANA and high RNP, what could this mean?

My daughter has been in serious pain for 2 years. Originally diagnosed with complex regional pain syndrome, now added to that ehlers danlos syndrome, and several months ago had some questions raised about autoimmune disorder. She has seen numerous doctors, been hospitalized for several weeks, tried SO many drugs, treatments, etc. I just know in my gut that all these dr's are missing something. Something I keep thinking about is this blood work. She has seen three rheumy's that say it's nothing to be concerned with, but I just can't believe it's not relevant.

She has a positive ANA, elevated ESR, elevated RBC, low MCV, low MCH, low CPK, and here's the one that seems so crazy...her RNP/sm is 300.

Isn't the RNP so high that it HAS to be MCTD? I can't understand why none of the rheum's seemed to care about this.

Do you all have any idea what else this could be? Should we keep looking for a diagnosis?

 
Old 09-20-2011, 03:17 AM   #2
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Re: positive ANA and high RNP, what could this mean?

Good morning. I'm sorry your daughter is going thru all this, and you with her. Mbbasketball raised pretty much the same question only a few weeks ago, i.e., what do RNP/Sm test results mean? I think we ended up thinking it's a dual test, necessitaing MORE tests to figure out WHICH of the two is elevated. i.e., only anti-RNP, only anti-Sm, or both? (But we're just patients, so you'd want to verify that theory!)

I don't know how high 300 is. Is it annotated on the lab printouts as HIGH? (But no matter that answer, elevated ESR ought to raise flags, one would think.)

Like you wrote, I've read that *only* anti-RNP suggests MCTD. However, if OTHER autoantibodies seen in lupus are ALSO present (anti-Sm, or any of the other umpteen), then I think lupus is a possibility.

How old is your daughter? I'm curious because my first prolonged hit was early teens, with fatigue, crippling pain, fever, elevated ESR, and depressed WBC = leukopenia. Years later I was told that lupus tends to exacerbate during hormonal shifts in women. (That alone wouldn't be diagnostic, of course---just interesting, and possibly suggestive.)

I hope others here weigh in, too. But re: your last question, personally I'd keep looking for clearer answers, esp. since the meds she's tried have not helped. Post more when you can, OK? Best wishes to you both, sincerely, Vee (P.S. What's Ehlers Danlos syndrome?)

 
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Old 09-20-2011, 04:54 AM   #3
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Re: positive ANA and high RNP, what could this mean?

Quote:
Originally Posted by ddd15 View Post
My daughter has been in serious pain for 2 years. Originally diagnosed with complex regional pain syndrome, now added to that ehlers danlos syndrome, and several months ago had some questions raised about autoimmune disorder. She has seen numerous doctors, been hospitalized for several weeks, tried SO many drugs, treatments, etc. I just know in my gut that all these dr's are missing something. Something I keep thinking about is this blood work. She has seen three rheumy's that say it's nothing to be concerned with, but I just can't believe it's not relevant.

She has a positive ANA, elevated ESR, elevated RBC, low MCV, low MCH, low CPK, and here's the one that seems so crazy...her RNP/sm is 300.

Isn't the RNP so high that it HAS to be MCTD? I can't understand why none of the rheum's seemed to care about this.

Do you all have any idea what else this could be? Should we keep looking for a diagnosis?
First I am sorry to hear about you daughter.
What I found unusual is the DX of Ehlers-Danlos syndrome. That would be the opposite of MCTD, ie Scleroderma which is one of the over-lapping disease associated with MCTD. But with the said, both are connective tissue disease.
What was her ANA pattern and level(reference level could be helpful). Also all her lab levels with lab reference.
I would take your daughter to hematologist. I usually have low RBC, high MCV and MCH which would indicate pernicious anemia, but everything comes back fine with Vit-B12 and folate. I usually have problems with my ferritin dropping. I get Iron infusion to get my levels up to 70. You may want to ask your doctor to run Ferritin and full iron panel.


I am still in the process of getting a DX. My dermatologist is thinking more of MCTD because of my high RNP. I was told that you can not have a false postive RNP(also called Sm/RNP, U1-RNP etc). For me because of postive ANA(1:40) with negative SM, but high SM/RNP, doc is heading toward MCTD. My dermatologist is talking to all my doctors, ie hematologist, former rhematologist and PCP. Oh, all my other anti-body test were negative which is another sign toward MCTD.

I also see a cardiology and he said it makes sense with my condition that MCTD could be causing my cardio problems.

Does your daughter have problems with Raynaud's?

After 40+ years of multiple and strange symptoms, I hopefully closer to an answer.

 
Old 09-20-2011, 05:32 AM   #4
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Re: positive ANA and high RNP, what could this mean?

mbbasketball & ddd15, I just noticed how different the #'s are that you two provided for RNP/Sm test: 6.something (msbasketball) vs. 300 (ddd15). I wonder if these reflect the same test with results expressed differently, or different tests?

ddd15: My city doctors ran very specific ANA *subtype* tests, where each autoantibody shows a unique value (e.g., anti-ds-DNA, anti-ss-DNA, anti-Ro, anti-La, anti-RNP, etc.) Was the 300 RNP/Sm value the *first* time you'd seen a positive on any antibody test? If YES, that might be another reason to believe that more finite tests could be run, but just haven't been done yet. Anyway, I'm glad you two met each other! With my best, Vee

 
Old 09-20-2011, 06:26 AM   #5
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Re: positive ANA and high RNP, what could this mean?

Thank you all for responding. My daughter is 15, and I do think her hormones kind of set this all off. Her struggles began in August of 2009 at age 13. As for her elevated ESR I have always been told it is due to all her inflamation from her CRPS. I guess it sounds like like there could be some more specific tests run. I don't know why this wouldn't have been done already. Her results for RNP are listed like this: RNP/Sm 300 reference range 0.00-83.00 As far as detailed info on the ANA, there is none.

Ehlers Danlos is a connective tissue disorder, but it is not autoimmune. She was semi-diagnosed by a geneticist with this. She has the hypermobility form and there is no gene identified yet for it. SO, diagnosis is clinical. The geneticist we saw gave her a "probable EDS" as diagnosis! Maybe she doesn't have this. We are grasping at straws. In fact, we have totally been ignoring the EDS diagnosis, focusing on the CRPS until a new pain mgmt dr. suggested that we look further in to EDS. She felt like EDS might be causing most of my daughters pain.

My daughter is really incapacitated by this pain. It's that bad. She hasn't been to school in two years and rarely gets off the couch. She does go to dinner once a week with friends and we go shopping with the wheelchair of course. She sees a psych, so I'm not too worried about depression at this point. Although I have to say - I would be depressed!

She has so many random symptoms and has been through so many dr's, some not believing her, others trying painful treatments, and no one really offering any sound guidance. I guess that's why I'm posting here. I'm looking for some diagnosis that could explain it all.

I know this is getting long, but I'm going to list some symptoms just in case someone reads this and a light bulb goes off! Here goes....

Electrical, shooting pain, legs and back
throbbing aching pain, arms
burning pain, all over
VERY sensitive to touch, hates to shower because the water stings running down her
tremors, arms and hands
dizzy spells
"seizure" or fainting spells (EEG's normal)
numbness/paralysis in legs - couldn't move for 2 hours
vision disturbances
migraines
severe rib pain, hurts to breathe
lack of concentration
joints that sublux, or dislocate - mostly shoulder
fatigue

Sorry to drag this on...hoping someone might notice something. thank you all for your support and advice you've given.

 
Old 09-20-2011, 07:05 AM   #6
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Re: positive ANA and high RNP, what could this mean?

Hi ddd15,
Saw your daughter's list of symptoms and I thought I had written them for myself. Before the high RNP, my doctor was thinking Mitochondrial Disease in particular MELAS. Now I am not in anyway saying that is what your daughter has, but you might want to look it up. There is a foundation for this disorder on the web.
Unfortunately there not too many Mitro doctors for adults cause this is mostly diagnosed and treated on the pediatric level, you will have to go to a major peds hospital for testing.
Keep you and your daughter in my prayers. It is difficult to deal with illness, but it is more difficult when it is your child.

 
Old 09-20-2011, 07:30 AM   #7
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Re: positive ANA and high RNP, what could this mean?

funny you would mention mito. I belong to a parent support group for CRPS. Several of these CRPS kids have been diagnosed with some form of mito. I keep reading about it, but then get sidetracked with some other crazy event....I am going to look into it again.

I submitted a request to Mayo for my daughter to see several different types of doctors, maybe there's a mito dr. there? Thank you for pointing that out.

 
Old 09-20-2011, 09:01 AM   #8
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Re: positive ANA and high RNP, what could this mean?

ddd15, another thought. Did you see the "alternative criteria" for lupus? Look in 2nd section of the lupus criteria "sticky post". By 15, your daughter's current age, I'd have matched many, had I known a thing about lupus. Thinking of you both, Vee

 
Old 09-20-2011, 11:02 AM   #9
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Re: positive ANA and high RNP, what could this mean?

Hi again dd15,
I am glad to see that your getting some answers on this board. As I said on the immune disorder board, I have MCTD. Re: the RNP test values, my RNP started at 614 with my ANA as high, then retested again- they were 1246 au/ml. They remain high which does usually indicate MCTD. Also, I have been negative for other tests except for the white and red blood cell tests. I have had severe anemia, muscle weakness (high CPK levels), lung involvement, with the same burning pains, fatigue, etc. I also developed migraines.
Has your daughter been given an EMG test(electromyogram)which can detect abnormal muscle electrical activity to see if she has muscle damage? Or a muscle biopsy? I had this test to see if I had a type of myositis which can be a part of MCTD. By the way myositis is autoimmune and affects the whole body particularly the muscles like shoulders, hips etc. I hope that you can find the answers for your daughter. Keep us posted.
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Last edited by grace70; 09-20-2011 at 11:11 AM.

 
Old 09-21-2011, 09:55 AM   #10
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Re: positive ANA and high RNP, what could this mean?

Grace, I just read a little about Myositis and wow, does all that sound familiar. Thank you for throwing that out there. Surprisingly she has never had an EMG. I am definitely going to spend some time researching this. I can't believe how much what I read sounds like Kendall.

 
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