Does anyone here have any info on MCTD?? I have recently been somewhat diagnosed with it by my family doctor, although we are waiting and have been waiting for a Rheumatologist appointment. So I can't say that I have it yet.
Anyway, any info I come across seems really super vague. I was wondering if any of you have any info that you can share with me??
I have been diagnosed with CFS/Fibromyalgia December of 2009, but about a month ago I went into a nasty flare. I was due for a B12 shot, so while I was there, I told my doctor that I was having a flare. He ordered some blood tests and they came back positive for some antibodies so this is where the MCTD suspect comes up.
Another question for you, if I do happen to have MCTD, does that take the place of the CFS/FM or will I have all 3 conditions??
Dear sweety2002, I find it hard to believe your primary could make that kind of dx. Most specialists would have a difficult time dx MCTD. This is a very complex autoimmune disorder to dx and to treat. You present with a really challenging list of disorders. I know how you feel. I've been ill with autoimmune disorder, saw 4 neurologists and have 4 dxs. No one knows what I have, but I did find a treatment for my condition, so I'm treating the symptoms, which I've learned is quite common in autoimmune disorder. My treatment is somewhat invasive and risky but it really helps: it's Plasma Transfer, to keep it simple. In the end you may have to treat the symptoms, sorry to say, in order to find something that makes you feel better. Indeed, even if you find that you do have MCTD, there is no cure. Consequently, we're back to treating the symptoms. My heart goes out to you. Hang in there. I know you're going to find an answer and feel better. All the very best of luck. Awlright.
I am waiting for a referral to go see a Rheumatologist. My primary said with what he sees in the blood tests, it looks like MCTD to him but we will wait to see what the Rheumatologist has to say for a definite diagnosis.
I had a whole bunch of blood tests done in 2009 when I was complaining of fatigue that never went away. I also had a few aches and pains that weren't bad at that time. There was 2 sets of tests done, one month apart. Everything came back normal. When that happened and I still had the fatigue, I was sent to a Diagnostician. He had diagnosed me with the CFS/FM in December of 2009.
So I have been living with that diagnosis until now, I have a potential new diagnosis. So if I do have MCTD, would that take the place of the CFS/FM diagnosis or would I have CFS/FM along with MCTD??
That's a great question Sweety 2002. I think you're unique in what's going on, but let's hope that your body settles down to one condition that can be treated successfully. I'm impressed by what I sense is a strong determined attitude to make a fight out of this and not let it depress you. Don't let anxiety and stress get you down. Our approach to these disorders is fundamentally important. Medical science is just beginning to understand how our biological make up really works at the cellular level, believe it or not. Last century, given the cold war, all the money was going to physics. With the reading of the DNA code we've finally turned a major corner in biochemistry and are learning something about how these strange disorders work. Hang in there and take care. Let us know what the final diagnosis is. I say that with some irony having received 4 different ones myself. Best of luck, Awlright.
yes, you can have both conditions simultaneously, but you really need to talk to your Rheumy about your symptoms, diagnosis, and treatment plans. The right treatments can make a huge difference! A good resource is the Lupus Board - it's not just for "Lupies".
I am still waiting for my Rheumatologist referral. I know she is one of the best in my area, so she's got a long waiting list. But yeah, I'm waiting to hear what she's got to tell me. When I had these blood tests done, my family doctor sent her the results too so she's got copies of them.
But thank you, I am happy to know now for sure that we can have all of these conditions simultaneously.
Yeah, I am doing my best to not let this get to me. I am not doing all that much right now in the way of activities or anything like that, so my symptoms aren't extreme, except for the tiredness. But the thing that makes it hard is the pain is minimal but it is all over, in different places. I am careful not to do too much cause when I do, I really do pay the price. Heheheehee!!!
So I'm just dealing with what comes at me, taking one day at a time cause it's different every day.
Make sure that you write your symptoms and questions down, too. I know that I forgot a lot of stuff on my first visit to my rheumy that I later wished that I had asked. That's when I started writing stuff down, if it was important that I remember. Makes for a lot smoother visit, as I don't waste a lot of time on things already covered and can deal directly with my concerns at hand. (I've been at this a while, lol).
And if it turns out that you do have an autoimmune disease, don't let the meds scare you, if your dr deems it neccessary for you to be treated with them. All meds have side effects, and the ones used to treat these diseases need to be monitored. That being said, most people do not have the bad side effects and benefit from them. Just wanted to let you know you're not alone.
And oh yeah, when I get the "Tired's" i grow dust rhinos, not dust bunnies, lol. I played with the kids instead of playing with the vacuum.
I have been diagnosed with CFS, UCTD, Fibromyalgia, had a low B12 but it's back to the lower of normal, Vitamin D deficiancy, now MCTD is suspected.
As far as one condition taking the place of the other, yes, I do believe that is possible. If you have MCTD, that clearly explains your fatigue and pain. I believe CFS is due to a week immune system, as MCTD would be due to an overactive immune system. Either way, it's malfunctioned and made you sick. Initially, your immune system may have been weekened from infections, and it is thought that it can cause an autoimmune disease in some people when it does that. I still struggle with chronic infections, and they have become a big part of the reason I flare. It can also be herediatary.
You may have trouble getting a diagnosis through a rheumatologist, then again you may not. If your symptoms right now are mainly fatigue, and pain, and if your blood work just shows a positive ANA and some antibodies, a rheumatologist may say it's nothing, even though the disease could very well be there.
With MCTD, the antibody that is looked for is RNP antibodies, typically that will be the only one you have, and abnormally high. When the RNP level is low, it could be more indicative of Lupus.
The type of problems that a rheumatologist will be looking for is if you have muscle pain, any joint pain or swelling. If you have had any inflammation or fluid around your heart or lungs. If you have raynauld's. Any rashes like with Lupus, but with MCTD that is not so likely to occur. They are going to look at your blood work to see if you have high ESR and CRP levels (inflammatory markers). They are going to look for low red blood cells, low white blood cells, they may look at your platelet counts, blood clotting factors. They will likely test your liver for hepatitis. They also look for kidney disease, which is something else that is mainly due to Lupus.
I was diagnosed with CFS, and UCTD. My internist felt like this was just fibromyalgia. I have had two rheumatologists tell me that it isn't because I don't have the tender points for fibromyalgia. My internist sent me for evaluation of MCTD earlier this year, but the rheumatologist diagnosed CFS again. Problem to be, I only had a few signs of CTD, and only a high ANA & RNP in my blood work. No high inflammatory markers, and the rest of my blood work looked good. It is not the least bit easy to get this diagnosis, unless they can see with their own two eyes your joint issues, or see in the blood work something is definetly wrong, then you will likely struggle for a diagnosis. If you have a good rheumatologist, they will treat you with plaquenil and see if that makes a difference in your quality of life, that itself is strong proof that the CTD is there. If your anything like me, your RNP antibodies will go down with treatment while your improving with your symptoms, and up if your in a flare, that is another strong indicator of it being MCTD. If all of your blood work is normal but your ANA, you really need to ask your rheumatologist to consider doing this if they try blowing you off. Why my first rheumatologist felt like I had UCTD instead of fibromyalgia, because of the improvement I had on plaquenil. At that time, I did not have any antibodies in my blood to point to a specific disease.
I have been sick for along time. I've had a serious struggle with chronic fatigue, it pretty much ruined my past life, and I could not have one because of it, I had to stay in bed most of the time. Depressed because I was sick. My pain wasn't so bad in the beginning but it has worsened. I initially just had muscle pain but now I have joint pain as well. My joints don't swell. My spine always hurts. I have some muscle weakness. Alot of neuropathy pain/sensations with slow stomach emptying, congentive problems, incontinence. I have mouth sores regularly. My stomach, esophagus, and bowel problems are bad. I have bladder problems. Dental issues, I've lost half of my teeth. My vision has became worse. I get a rash in the sun that didn't occur until recently. I have mostly avoided the sun, since it causes nausea, headaches, PVC's, and shortness of breath. It's not like I was able to get outside and live my life anyways. I had lung pain for 6 months last year and symptoms of pleurisy, it was not x-rayed, of course. The rheumatologist I went to made me feel like my problems meant nothing, she said my blood work (ANA) was meaningless. I have to find a new rheumatologist now or make the decision to try talking to her again.
Initially my problem was just fatigue, pain came later on, then one problem after another. I have had an extreme improvement on plaquenil and my internist has me on this medication. It continues to lower my antibody. I am hoping that a rheumatologist will see this as proof that I do have a connective tissue disease. I wish that my internist hadn't taken this CTD diagnosis from me, maybe it wouldn't have progressed into what I suffer from now, or took so many years of my life from me.
Your sick, you have the positive ana and antibodies. So whatever you do, fight for this diagnosis, do not let a rheumatologist tell you it's nothing. If they do, you come back and talk to me, and I will help you prove them wrong! Simple as that..
I also have MCTD and have been looking for information. The best I have found has been at www.rarediseases.org Yes, we are on the offical rare disease list. That is why there is so little information.
Gdiluca.......Oh goodness, I'm not afraid of the medications, unless it has an anti-inflammatory in it. I cannot take anti-inflammatories at all. I take Lyrica and Amitriptyline for the pain and Effexor because it is supposed to lift my energy but I honestly don't feel it. Plus some other medications. I think I can run a pharmacy. :P
Yeah, I should start writing things down again. I did give my family doctor a written list of symptoms way back when and he actually still has it. But I have been getting slack on writing stuff down.
Justthinking132........I'm really sorry to hear about your struggles. It's really a pain to not know what we are dealing with or to think it's one diagnosis and then to get it switched to another and another, etc.
My B12 was low as well but I've been getting monthly injections to make sure it doesn't get low again.
I have had quite a bit of blood work done and I got copies of it. This is what came out of it.
ESR....41 (Normal is 0-20)
Rheumatoid Factor....Negative
C Reactive Protein....Negative
ANA....Positive
Anti-RNP......Positive
Anti-RNP-A.....Positive
Anti-RNP 68....Negative
All of the others were normal or just above/below normal which is of no concern to my doctor.
My ANA test did not tell me which titer or pattern it was, so maybe I will have to ask the doctor when I go see him next week.
I'm really hoping that the Rheumatologist appointment comes pretty fast. When I tell my doctor that I haven't heard anything from the Rheumy, he'll do something about it. He's really looking out for his patients' best interests. I LOVE my doctor.
Thank you for your concern. I'll definitely let you know if/when something happens!!
I also have MCTD and have been looking for information. The best I have found has been at www.rarediseases.org Yes, we are on the offical rare disease list. That is why there is so little information.
Thank you so much for that!!! I will for sure have to check that site out!!
Hi sweety2002
I am sorry you are going through all of this. I was dx's with MCTD in January through symptoms, high ana and positive rnp. I suffer from extreme fatigue, headaches, terrible joint and muscle pain, (mainly in my elbows and the muscles surrounding them), insomnia, neck, hip, knee pain as well. I am currently taking plaquenil 2x a day, an anti inflammatory and tramadol for pain. I have gotten very little relief from my meds and am hoping that they will start to work soon. Plaquenil is suppose to take several months to start working so I am hopeful. It is hard to bend and straighten my right arm. That elbow is the hardest hit by this nasty disease. I hope that your health improves and you get to feeling better soon! Let me know if I can help you in any way.
I am sorry to hear you have been diagnosed with this awful condition as well. It's a bugger, but you know what, we will pull through.
Your symptoms sound a lot like mine except my back is the worst. I have different types of pain going through my back everyday.
Oh my goodness, I don't have insomnia often, but I did have it about a week and a half ago that lasted for a week or 2. It was horrible. I couldn't get to sleep so I would be tossing and turning trying to get comfy. Once I fell asleep, I kept waking up. :S
So far, I am on Amitriptyline, Lyrica, and Effexor for pain. Well, the Effexor is more for an energy boost, but it's not working for me. Hehehee!!! :P The Amitriptyline is a low dose and when it didn't work, the Lyrica was added gradually until up to 150 mg twice a day. I cannot take anti-inflammatories because I also have chronic gastritis and it will kill my tummy.
Re: Mixed Connective Tissue Disease (MCTD) 
