Confused?? lupus or mixed connective tissue disease

[irishgirl13]

Hi all id like some advise, i went to my doctor just routine and on talking he says you have mixed connective tissue disease, i said no iv lupus, he says it says here mctd, i tell him i was told lupus by a private health care hospital (nhs sent me to this hospital because waiting times were that long) anyway im confused my blood tests show my anti chromatin antibodies, sm/RNP and RNP a antibodies are all sky hi, does this mean lupus or mctd, i was diagnosed 4 years ago at 24 its taking me a long time to accept this and just when i am accepting this dam!!! I feel it is lupus (although id rather have none of these yukky dieases) i cant go out in the sun as i burn and roll around my sofa all evening in pain when i do, i always feel tired.....always lol, last year i was of work for a month with a flu then a uti and just no energy, the year before that i was put in hospital after they thought i took a mild stroke, (all treating me with lupus) i have swollen hands, and joint pain i feel 90 most days, if anyone can shine any light on this i would be very greatful xx

[AnnNY]

I think the RNP antibodies put you in the MCTD category. But just remember, none of these disease labels are destiny. I have been diagnosed with so many of these things, going back and forth between lupus and MCTD, and now UCTD, APS, Sjogrens syndrome. You will only get the symptoms you get, and you will only know when the symptoms arrive. No one gets all of them, at least no one I've ever come across. I was on a MCTD forum, and the one thing I heard more there than here, is problems swallowing and the esophagus. It is one of those things you learn to cope with. I have some kind of inflammation of the esophagus, and dry esophagus. It comes and goes. When I was first trying to figure out what was wrong with me, and realized that lupus seemed like the most likely thing, it meant certain death. Now it is nearly 40 years later, and it stuck pretty much to joints and skin my nervous system and some very mild heart problems. I didn't even read up on the scary stuff. My theory is just to worry about the stuff I actually have and not to scare myself with things that might happen. It turns out to have been a good philosophy, because I would have been wasting a lot of time had I worried about everything in the lupus and MCTD disease universe, since they never happened! Also, so much has been learned since I was first diagnosed and there are many more treatments.

Hopefully, you will find a treatments that work for well for you.

[misty14]

Hi irishgirl

In Triona Holden's Talking about Lupus Book it gives a good explanation of MCTD. AnnNY is spot on as the RNP antibody that you have has to be present for it to be diagnosed.

The book says this diagnosis is basically Lupus with some differences;

1) MCTD is milder than SLE, as doesn't attack major organs.

2) the mixed part refers to symptoms that can occur of scleroderma and myosotis.

Other features of MCTD are Raynauds, Arthrits which includes joint swelling. Rarely does kidney problems occur!. It goes on to say the illness must be monitored for symptom changes!.

Hope this helps.X

[larainehudson49 in reply to misty14]

M C T D can attack major organs. My rheumy told me and I am monoterex for this annually

[misty14 in reply to larainehudson49]

Hi lorrainehudson

Just to be clear I got the information about MCTD from Triona Holden and Dr Graham Hughes 's Talking about Lupus Book.

I'm glad your getting the monitoring you need. X

[Paul_Howard Partner LUPUS UK]

Hi irishgirl13 ,

As others have already said, Anti-U1-RNP is the specific antibody for MCTD, so if you have a positive result for this it would suggest a mixed connective tissue diagnosis. You can read more about MCTD in our factsheet at lupusuk.org.uk/wp-content/u...

[irishgirl13]

Thank you everyone for your replies this has really helped me, it looks like mctd i forgot to add that i do have raynauds and the dry eye/mouth, i love this web site for help and advise, yous guys are all fab xx

[annlister]

I am exactly the same as you I was diagnosed with lupus after having a full blown stroke which left me paralysed on right side of body. After around 20 yrs with this diagnoses I got some different symptoms and was then diagnosed with sjorgens syndrome and she said its primary sjorgens as you don't have lupus I was shocked and asked what she meant and was told I had MCTD and now Sjorgens also. I get all the meds that lupus patients have and all the symptoms of lupus. I have trouble with my kidneys also. I think the diagnosis is so similar it doesn't really matter. I take hydrochloxochlorine and many other meds just the same as lupus

[irishgirl13]

Yes annlister i am on plaquenil have been for years, my worry is being treated for mctd and having lupus i work for the nhs and i know you need to go into docs etc with as much information as possible cause iv seen to many times where they palm you of at the expense of your health, time do to my research on mctd i think.

[Hidden]

I'm 21 and Iv just been diagnosed with Mctd 3/4 weeks ago.... The tissue disease is an overlap of lupus so you do still have it, I am on the medication for lupus which luckily enough is the same for the Mctd aswell....

[irishgirl13]

Im confused so mctd is stil lupus but along with raynauds and sjorgens?? Is it just a milder form of lupus?? Thanks for your reply xx

[Paul_Howard Partner LUPUS UK in reply to irishgirl13]

Hi irishgirl13 ,

MCTD is an autoimmune disease which is considered to be a 'cousin' of lupus. There can be an overlap in many autoimmune diseases that may involve any number of different variants of connective tissue diseases. MCTD is the most common seen combination, and symptoms of MCTD usually appear as a lupus or scleroderma variant. Some people have a polymyositis variant so have problems with muscle inflammation as well. Often with time, MCTD may evolve into one of the conditions of lupus, scleroderma or polymyositis.

[irishgirl13]

Forgot to add my doctor rang me today and confired it is mctd. :/