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high RNP, MCTD?

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Posted 10/6/2011 2:49 AM (GMT 0)
Hi, I am new to this forum. I have been looking around for a place that seemed to have a lot of people who might be able to give me some insight as to my latest labs.
I went to my derm for a rash. I do have psoriasis but these rash seemed different. Anyhow, had a skin biopsy and only psoriasis came up. He also order all kinds of test for Lupus to Hep C. The only thing that came up was:
ANA 1:40 positive( Homogenous pattern)
SM negative
ssa, ssb, negative
Jo-1 negative
CRP normal
Hep C negative
Sm/RNP 6.2 high(<1 normal)
From all that I have read, SM negative and all other test negative with High RNP indicates MCTD. If this is the case all my symptoms for he past 35 years makes sense.
I keep getting all kinds of strange blood work results, High CRP, High CPK and then everything goes normal. Hand swelling with fluid in joints but not arthritis, Raynauds for years, but no doctor thinks much of it.
Have had should pain for years, but getting worse, always in pain. Have lost most of my strength in both arms, but especially the right. I have difficulty for years unable to climb stairs. The funny thing is I could run for 6 miles everyday. Now for the past few months, I can hardly for 2 miles. This is really getting me down.
I seem to be in constant pain which hits random parts of my body, mostly shoulder, hand and legs.
I can't seem find a good rhemmy in the Phila area. Does anyone know of one?
I do have a heart condition which my cardio says could be related to MCTD.
Non of my regular doctors want to DX MCTD, so no treatment.
The fatigue and my body strength declining is really getting me depress. I am not usually like this.
For those who have MCTD, will this be my norm or can I expect to return somewhat to my former self.
Is there anything else which could cause such high RNP antibodies beside MCTD?

Thanks for reading this long post.
Posted 10/6/2011 3:07 PM (GMT 0)
As far as I know anti rnp is considered a marker for mctd which I also have.  Since you are not being treated it is hard to say this is your norm.  If your doctors had disagnosed you earlier and you had been treated you might have a reduction in symptoms or even remission.  MCTD is a complicated disease that presents, progresses and responds to treatment uniquely for each case.  There is no norm.

Your symptoms are consistent with lupus and polymyositis and heart problems can occur with either disease in some cases.  Your case is mild if you can run at all.  PM can be devastating and should be treated.  If you are not seeing an experienced rheumy you should find one asap and ask about appropriate treatment.

Bill

Posted 10/6/2011 5:36 PM (GMT 0)
Thanks Bill for your response. The fact is I use to be able to run, now that has become a challenge and has me depressed since I did so enjoy running. Now the problem is getting a experienced rheumy....
Posted 10/14/2011 9:58 AM (GMT 0)
Well, went to Rhemy and was told positive RNP is nothing when it is only positive on one test. I was not told why my RNP was high, just said it mean nothing even thou I explained all my symptoms. I did asked if RNP shows up in normal people especially at my level of 6.2 where reference range is less than( .90) and told again that it meant nothing. I was told that I have lost a lot of muscle mass and I asked why? But no answer given.
The Rhemy said let her know if I find anything out.
So I am even more confused. At this point, I have no trust in doctors and feel like they may find out after I an dead. No more doctors for me, I will just have to live with pain and whatever is going on.
Posted 10/14/2011 2:09 PM (GMT 0)
Sounds like you need a doctor you will communicate with you.

Muscle loss could be due to polymyositis which can cause temporary or permanent loss.  It is common to have muscle weakness of proximal muscles around both the hip and shoulder girdles.  Lower muscle mass can be due to atrophy (disuse of muscles) or polymyositis (pm).  It is important to use your muscles even if very moderately.  Do not try to do any strenuous activity but do any range of motion, light weights, stretching, easy cardio you can.  It will help in your recovery even though it might seem so at this point.

PM can cause servere loss of muscle as in my case (40 lbs in a week) but it is usually less severe and more gradual.  Typical symptoms first noticed are difficulty getting out of chairs, cars, going up stairs, and raising your arms over your head.  The pattern of weakness is symmetrical.

Don't focus so much on the labs.  They will eventually reflect whatever you have but they are not always a food indicator of disease activity at any given point in time.  Diagnosis of mctd or lupus are made with a combination of symptoms and labs.  Any given lab test can be normal when you are sick or abnormal when you are not.  How you feel is often a better indicator. 

I would seek another doctor if I were you.

Bill

Posted 10/16/2011 5:08 AM (GMT 0)
Hi Bill,
I was told that I would need a muscle biopsy for correct diagnosis, wither it Lupus or MCTD or something else. First would a biopsy really tell what is going on with me and is this a major things.
Also, do you know if ANA has to be really high with high RNP for MCTD? Do you know if there is any other reason what would cause high RNP? I have read once positive for RNP antibodies, you will always have them, so you know if this is the case?

For my own mental state, I will try to resume back to slow running or longer walking. I feel I need this for my mind. Running has always been my "me" time where I could even forget and for most part run through even mild angina pains. My cardio said my running kept my heart strong and help with blood pressure. So my thoughts are without a healthy heart, the rest is meaningless. I know I can not do the same activities at the same levels I was to do, but something is better than nothing.
Anyways, since, I can't get diagnosis, I have not been told not to do anything. I will try to do as you suggested to add strengthening program too.
Thanks
Posted 10/16/2011 4:03 PM (GMT 0)
A muscle biopsy is necessary to diagnose muscle diseases like polymyositis which is part of mctd.  It is not usually done for lupus alone.  It will usually tell you if you have any inflammatory disease in your muscles, IF, the sample is taken from an area that is inflammed and IF it is sent to an experienced pathologist.  It is also advisable to have an mri first to determine where and if a muscle  biopsy should be done.

Here is a site that explains lupus diagnosis.  Diagnosing mctd is similar but it includes symptoms from other diseases like scleroderma and polymyositis and requires additional labs and tests like mri or muscle biopsy.  If you are experiencing symmetrical muscle weakness then an mri and muscle biopsy is needed.  If not then I would not do it until symptoms appear.

http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnunderstanding.aspx?articleid=2231&zoneid=523

ANA could be negative.  If anti rnp shows up it means you have mctd.  labs can be misleading and are only part of the diagnosis.  I no longer have rnp antibodies and have been in remission for almost 6 years.

My advise would be to try walking first for a few days and see how you do and then try running or alternating walking and running.  Moderate weights, range of motion, and stretching should be part of what you do.  I no longer run or work out at high intensity but I can do whatever my body will tolerate and am limited more by old age and old injuries than disease. 

Bill

 

Posted 1/10/2012 12:45 PM (GMT 0)
Well it has been 3 months since all this started. Just a little update. I had an EMG/NCV, the result mild CTS, chronic R-c5-c6 and L5/S1 radiculopathies, Myopathy. The distribution of the myopathic findings may suggest inclusion body myopathy, but is also possible the neuropathic changes on #2 may be masking myopathic findings in more proximal muscles. The lack of active denervation indicated lesser likelihood but does not exclude polymayositis. Correlate clinically,

First what does this all mean. My neuro just said there is myopathy in my forearm(distal) and in my proximal muscle of the hip. He order MRI of C-spine and lumbar. Mri was normal, just a few DDD issures.
I did finally got steriod injection for my shoulder pain. Was told by ortho that I had bursitis. The injections has helped a lot.

Now here is my other question. My first ANA was low titer 1:40 Homogenous, and Vit d was 54, and RNP over 6. Three months later, ANA is 1:80 Speckled and Vit d 28. What could the pattern and titer change mean? Has anyone experience vit d decline?

Also, I ending up calling 911, thought I was having a heart attack. I was doing nothing, watching TV and my heart started pounding out of my chest, heart rate was over140 and my blood pressure was 210/110. I took nitro, but chest pain and blood pressure did not come down after two nitro and chewing on aspirin. So called 911. Admitted to hospital, was told nothing was wrong with heart, anxiety attack, the only thing showed up was prolong QT, but cardio did not think anything about this. Has anyone had problem with blood pressure and heart rate with MCTD?

I think the docs think I am making all this up. I know I am not. I know I should seek new docs, but am really tired and just don't have the strength. Docs keep telling me to make another appointment, but besides taking up my time and money, never get answers. This maybe wrong, but I just cancelled all my appointment with primary and cardio and neuro. What is the sense of follow up if there are no new test to dx or r/o a disease?

Sorry for the long post,
Hope someone on this forum can give me some insight as to what you have gone through before dx.
Oh, I ask again, does high RNP ever change if no med is given? My primary does not want to run it again, don't know why.
Posted 1/10/2012 1:49 PM (GMT 0)
My doctors never did an emg so I don't know how to interpret the findings.  Muscle biopsy is the best way to determine what you have and my docs did an mri first to determine where the inflammation was active (in my case, everywhere) and to inventory the extent of the disease.  If you had polymyositis the pattern would be different than for IBM which has inclusion bodies.  However, IBM is often very spotty compared to the typical case of PM.  Progression of the 2 diseases is quite different however.  PM hits the proximal muscles symmetrically and progresses over a period of weeks or months.  You will first notice difficulty getting out of chairs, going up and down stairs, and raising your hands over your head.  IBM progresses over a period of years and does not often include another disease.  It affects your quads, forearms, and hands and is often not symmectrical.  It is an entirely different disease.

ANA patterns and results can change.  I don't know the explanation for it.  Don't know about RNP changing without meds...probably can.

I had a spike in BP but it was due to being on high doses of prednisone for 10 months.

My suggestion is that you get a second opinion from a rheumy, not a neuro.  Make sure the rheumy is experienced in treating AI diseases.  If there is a local lupus support group you might want to attend it and ask about local doctors.  Rheumys take a different approach to diagnosis and are the specialists I would seek.  You should not be so impatient with your docs.  They are now omniscient and MCTD, IBM or PM can be difficult diseases to diagnose no matter how good the doc.  I know others who had either the wrong diagnosis or no diagnosis for months, even years.  One friend had a diagnosis of PM only to find out 25 years later he had IBM.  I don't think that mistake would happen today but in the early 80s few docs had experience with PM or IBM.

Are you currently getting any treatment?  What are your clinical, not labs, symptoms?

Bill

Posted 1/10/2012 2:25 PM (GMT 0)
My biggest problem is that I feel my right leg will give out and weaker than my left. My hands will get this funny cramp and distorted, like the finger lock on my right hand. I do have difficulty getting up from sitting or squatting position all the time. When I try to walk, my right legs just seems weaker and will get cramping in the calves. But I am trying to get back into somewhat to slow running. But after wards, I get really, really tired. I also get this ripping burning feeling across my upper chest. Headaches daily. Even thou my should is not in pain, my right arm is still weaker and I drop things all the time. I do find that I am having some speech problems, like I can't pronounce words correctly. My finger don't type as fast as the use too. fingers slower to move.
I have not been given any treatment plans since I do not have a dx. So mainly, I try to keep doing some weight training and walk/run for short distance. I just hope I am not doing more damage to my body which can not be reverse.

Thanks
Posted 1/10/2012 3:00 PM (GMT 0)
You have a mix of inconclusive symptoms that don't seem like those typical of mctd, pm or ibm completely.  The headaches and chest pains are usually not part of these diseases although pm can affect the heart in some cases.   Time for you to get a second opinion.  I suggested a rheumy earlier but maybe not.  For something like this I would seek a clinic like Mayos, Cleveland Clinic, Northwestern U that can take a team approach and have a better chance of finding the diagnosis.  Just a thought.

Bill

Posted 1/13/2012 10:38 AM (GMT 0)
Re: VITAMIN D - mine totally bottomed out at 21 right when my diagnosis was pending (when at my worse & u know they say VIT d deficit can cause autoimmune to show its ugly head!
Also...I had same heart rate prob - went up to 150 & STAYED THERE! SO YEAH..THAT CAUSES A LITTLE ANXIETY! WENT TO CARDIOLOGIST & HE SAID IT WAS BC I WAS IN SOOOOO MUCH PAIN (& O GOSH I WAS!)
BUT..IF U COULD RUN -that's a MIRACLE! I COULDNT EVEN WALK!
Posted 1/13/2012 10:52 AM (GMT 0)
Hi its me again - Angelina! I posted a min ago then I read more.of what u wrote & bells starting going off (well..figuratively!) U sound a lot like where I came from - I was a runner, very active & then slowly these odd symptoms began happening to me (having 2 babies they said also triggered. - prob fr stress!)
It took a LONG TIME to get a diagnosis & I know u are not making the symptoms up! But my des acted same way! I finally went to 1 of those Drs that are urgent care when it got so bad I couldn't walk & asked for an ANA -TOLD EM I WANTED NOTHING ELSE! DR SAID ..OK BUT IM SURE U ARE FINE! BUT HE CALLED ME 2DAYS LATR & SAID MY RESULTS WERE OFF THE SCALE!
THEN MY GP ACTUALLY LISTENED BUT TOOK 6 MOS TO GET IN TO SEE RHEUM!
PLS DONT GIVE UP...LISTEN TO YOUR BODY - U KNOW WHEN SOMETHGS WRONG!
Posted 1/13/2012 11:49 PM (GMT 0)
My D was at 8. I now take 50,0000IUDs every week.
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