MCTD

Posted by andromeda5845 @andromeda5845, Feb 6 8:18am

Hello. I’m a 49 year old woman living with pain and weird symptoms(hair loss, GI symptoms, dry eyes, pain everywhere) every single day. I’ve been to several specialists with different opinions for the better part of four years. I had a positive ANA ordered my gastro and was told
Not to worry about it. Symptoms continued and was finally referred to a rheumatologist a few weeks ago. I have a positive RPN but it’s only 1. Not sure if this means I’m not positive or if it needs to be higher to be considered positive. The pain in my body has made me quit my career and I’m presently barely working. My apt to go over labs and X-rays is tomorrow. Does anyone have any insight on this? I’m trying to prep myself for this apt and what to expect. I feel so frustrated it’s taken this long to get here and wonder if the damage to my body is going to continue to worsen if docs don’t take this seriously. I went from running and every working every day to a body I don’t even know anymore. Any insight is so appreciated.

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You dont say whether your on any drugs. Such as prednisone. Some of those conditions are symptoms. I have polymyalgia rhuematica. (PMR) . If you are on prednisone that would rule out PMR if your on a high enough dose.

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I’m not on any drugs yet. My apt to go over my results are actually tomorrow morning. All I know so far are my blood lab results and the symptoms. Pain is very bad and I know something is happening, just afraid aim going to be dismissed…again.

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andromeda4845,
there was a good post on antibody testing this week that I can't locate yet. You might ask for retesting ANA and I would want ENA https://www.mayoclinic.org/tests-procedures/ena-panel-blood-test/about/pac-20549803#:~:text=If%20you%20have%20a%20positive,Lupus.
Your doctor may just order them without your request, but keep your request handy (as some physicians would rather guess). I'm looking for the post. I think it was from AU.
You've suffered too much for too long.

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They’ve done ANA twice. Always high according to labcorp. Rheum did full panel for autoimmune and everything is negative except high RNP antibody which looks like MCTD when I google. I try hard not to go down the google rabbit hole but it’s really all I have at this point. Just not sure how high the RNP needs to be to get a diagnosis. I live with pain in every part of my body every single day. OTC meds don’t touch it so I gave up on that. They took my gall bladder out and that did nothing. Gastro gave me PPI which made it worse. Enter Xanax to sleep and even that doesn’t work most nights. Seems like it’s all just guesses and Im trusting these docs with my life. Super frustrating. I appreciate these replies so very much.

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@andromeda5845

They’ve done ANA twice. Always high according to labcorp. Rheum did full panel for autoimmune and everything is negative except high RNP antibody which looks like MCTD when I google. I try hard not to go down the google rabbit hole but it’s really all I have at this point. Just not sure how high the RNP needs to be to get a diagnosis. I live with pain in every part of my body every single day. OTC meds don’t touch it so I gave up on that. They took my gall bladder out and that did nothing. Gastro gave me PPI which made it worse. Enter Xanax to sleep and even that doesn’t work most nights. Seems like it’s all just guesses and Im trusting these docs with my life. Super frustrating. I appreciate these replies so very much.

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You have symptoms of PMR. But many diseases mimick the same.

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@andromeda5845

They’ve done ANA twice. Always high according to labcorp. Rheum did full panel for autoimmune and everything is negative except high RNP antibody which looks like MCTD when I google. I try hard not to go down the google rabbit hole but it’s really all I have at this point. Just not sure how high the RNP needs to be to get a diagnosis. I live with pain in every part of my body every single day. OTC meds don’t touch it so I gave up on that. They took my gall bladder out and that did nothing. Gastro gave me PPI which made it worse. Enter Xanax to sleep and even that doesn’t work most nights. Seems like it’s all just guesses and Im trusting these docs with my life. Super frustrating. I appreciate these replies so very much.

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Good luck and please post whatever says. I’m also new to this I was diagnosed 3 weeks ago with MCTD. In still working thru it all. However I do not have the pain you do. I’m sorry you’re hurting so bad. I’m a 69 yr old female and still able to do yoga again good luck

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With your syptoms and positive RNP sounds to me like you like are having a autoimmiune flare for sure. Look at all of your blood tests closely. If your CK and CRP levels are really high your Doc should be putting you on Prednisone or Medrol right away. I am pulling for you, this a tough journey. If you are not getting the right answers keep changing Doc`s until you find one that really wants to help. Unfortunately, you have to be your own best friend and advocate to get to the truth. Don`t give up!

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The high ANA and RNP does point toward MCTD. Prednisone should give you some immediate relief and then the other drugs used take 2-3 months to kick in. Hope your rheumatologist is a good one, interested in helping you get relief and treatment aiming for control/remission. Thank are lots of helpful people here who will take the time to share and support you. Glad you found us and you will learn a lot from those on the same journey. Strangers helping strangers but a wonderful way to connect and not feel alone and frightened. Stay with us and keep posting your concerns and progress. We are always here and happy to help!

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