My dr has me on nothing right now. According to my labs I am also in remission. I dont think that means we still dont have MCTD. Mine has come back several times. Even though I am in remission, (he says) I still hurt in my joints and muscles. He says osteoarthritis and possible fibro but not bad enough to treat. I currently have a frozen shoulder in addition. When the therapist manipulates my shoulder, the joint hurts no where near as bad as the muscle where her hands are holding my arm. I find NSAIDs help a lot. See if you can get some meloxcam or Celebrex and see what happens. Good luck.
Mary Ann

I’m sorry to hear about your shoulder Mary Ann, and thanks for writing it means a lot. I feel so alone in this and my friends are empathetic but they just doin’t get it. It’s 3am and I’m up because of the pins and needles. She is adamant that this is not MCTD but might be my vitamin levels. Guess I will call my doctor on Monday but I don’t understand, if the joint and muscle pain and pins and needles isn’t related than why is it all over message boards online? We’re all just making it up????

Blood sais a lot, I was furious at my reumy when he said I don't have scleroderma but than it turned out that it is that it is MCTD, so he was right. For sleep try lavender camomile or lemon grass, to drink or essential oils they help very much. And keep looking it has to be something.

I know that sometimes high or low calcium levels can cause the symptoms you are experiencing! Not to dismiss your symptoms as not being MCTD.

Let's unwrap this a little bit, because I think MT's doctor is saying something different from Valley's doctor, though that's only a hunch. And I think they are both wrong, though I'm not a medical professional, just an older patient who has been around a long time.

Valley, what she probably means is that your ANA is not positive even though your Anti-RNP is positive, therefore you have the illness but it is not active. This is complete nonsense. My ANA was negative and my D-Dimer and all kinds of other biomarkers were negative when I had my blood clot. I think it was negative for pericarditis as well-- I know I had terrible flareups and 102 degree fevers when my ANA was negative. It would be easier for doctors and insurance companies if biomarkers were that reliable, but they are not. An ANA is a good test to run-- so is a muscle enzyme test-- these *often* indicates disease activity, but they are not 100% reliable, not even 70% IMHO, maybe only 50% or even less.

What MT's doctor has said is that because her anti-RNP turned negative after being positive-- which is extremely rare, so rare that for DECADES it was accepted clinical practice to not run the test more than once or twice because it was pointless-- she now does not have MCTD.

Her doctor's assumption seems to be based on the assumption that the anti-RNP antibody is what causes MCTD. This is a dangerous oversimplification that confuses correlation with causality. Here's the best site I've found for explaining the relationship between anti-RNP and MCTD:

https://rarediseases.org/rare-diseases/mixed-connective-tissue-disease-mctd/

So... yes, your body will attack the extra RNP, this is why the RNP is a MARKER for MCTD. But the symptoms are caused by the overactive immune response, right? So just because the RNP is absent for some reason doesn't mean the disease is gone. Your immune system might keep on fighting, and it's not at all clear that there is ANY biomarker which indicates this reliably.

Think of it this way: Police officers (RNP) look kind of like soldiers. If your body were a city, in MCTD, the police officers wind up on the hills in the suburbs in jeeps instead of in squad cars. So, the Army sees this activity, and misidentifies them, and deploys skilled but overly aggressive commandos who start shooting at the police officers, also killing civilians, and damaging hospitals and churches.

Let's say your body-- the city-- figures out what's going on and recalls the police officers, puts them back in squad cars and on patrol. (In our metaphor, this means your anti-RNP is now negative.) That doesn't mean the army retreats! Sometimes, it keeps advancing anyway, and the soldiers go house-to-house, still killing civilians and damaging infrastructure.

If you're lucky, maybe this will be observable-- you'll get a positive muscle enzyme test or a positive ANA, you'll see a school with bullet holes in the window, or find wounded people in the lobby of a building. But entire neighborhoods may be unaffected. The commandos might be holding the mayor hostage in his office, and you'd never know.

So blood work both does and does not say a lot.

As for what your doctor should be doing? It may be true that they can't do anything to change immune system activity they can't even see, but they should be trying to alleviate symptoms! Yes, healthy eating habits, paleo diet, avoiding nitrates and processed foods, exercise you can tolerate, absolutely. Meloxicam, CBD oil (if it's legal and you can afford it), possibly Plaquenil, maybe narcotics on the worst days, alternate-day low-dose steroids for six month periods. To do nothing is irresponsible. Sometimes, I believe you can drive the illness into remission by relieving symptoms and trying to live as normal a life as possible.

My thoughts on sclero are much more speculative.

The diagnosis of MCTD does not rule out Scleroderma, they are not mutually exclusive. I do think that MCTD would tend to suggest that the Scleroderma might be milder, or more likely to go into remission. (Conclusion based on mix of literature review and anecdotal reports..)

Conversely, MCTD with more predominant symptoms of sclero can often be a more aggressive form of MCTD, and requires greater vigilance. (Literature review and anecdotal reports.)

My personal belief is that all MCTD patients probably have some sclero symptoms (more speculative conclusion based solely on anecdotal reports and reports here.) Technically, I don't have scleroderma-- but I've had two blood clots, the skin on the leg that clotted is totally waxy and strange, and I have dysphagia and Raynauds, which both usually have small blood vessel vasodilation involvement.

So technically, no, I don't have Scleroerma, but I sure have a lot of symptoms which have a lot in common with sclero, don't I?

Sorry for the long rant. Hope that is helpful! Hang in there, and find someone who will work with you on those symptoms! You deserve more thorough care.

Thank you catalyst!!! You should be a Dr. !