MCTD Support Group

Hi there and welcome to the group.it is frightening at first. There is some pretty good info and discussions if you look back further. I am diagnosed UCTD. Its a good group here. We have roll call everyday and catch up on how people are and what we are doing. You will get more answers later but if you want to message me please do so.What where the results of ana type? hugs marilyn

Good morning and Welcome to the group. this is a wonderful place to learn, laugh and vent. have a question, or concern, ask away, chances are someone here has an answer or a point of view that will help.

welcome!

Kristin

Welcome to the group! It can be very scary when first diagnosed. After awhile you learn how to cope on a day to day basis. Then there is always remission! Join us at out daily check in!

Hi Chloe, welcome to the group. I was recently diagnosed with UCTD too. I completely understand the alone feeling. But, this is a great group. When you are feeling at your worst, come here...read through the posts and it will help you because no one except someone that is going through your similar struggles can understand what you are going through. But, make sure you understand that just because some is going through something really bad at this moment, it does NOT mean that you will EVER experience the same thing!
I know it's really hard to keep a positive spin on things, but you have a really beautiful smile so try to keep it on your face as much as you can! Welcome to the wacky and wonderful (there is a great deal of sarcasm behind this statement by the way) world of MCTD/UCTD!

Welcome, Chloe,

Yes, the phase after initial diagnosis is rough... I was 15 when symptoms presented, diagnosed at about 17 with Lupus before they had the antibody test, and re-diagnosed as MCTD after multiple positive Anti-RNp results. But back in the '70s, they didn't have all these antibody tests. The principal of my school thought I had a psychosomatic illness, and my fellow inmates at my snotty prep school in Manhattan were not very nice... I missed a lot of school. I got pericarditis at 18, and things really did not look good...

But I went into a long remission, and life, incredibly, went on... I've had a great creative, professional and personal life, and I'm very, very lucky. Now I'm in very early middle age, though I am too vain to ever tell anyone exactly how old I am (I'm 50) and some symptoms have returned-- but not as bad as before, and I am still very active. The course of this disease is very unpredictable, and it's surprising what you can and cannot do. I can swim three quarters of a mile without stopping at a decent clip, but I can't pull up the top of my convertible with one hand! I can work an 11-hour day, but I can't sit in a hot car for more than 15 minutes, and I use a special chair at work due to vascular damage from a blood clot. I can ski very well, surf badly and only for very short periods of time, and barely ride a bicycle.

A lot of the game is figuring out exactly what you can and can't do and for how long... and getting as much done as possible between flare ups without tiring yourself out! And remembering this disease is not your fault and not beating yourself up about it.

Welcome!

--Catalyzt

Thank you for the welcome! I've been reading through the past posts and they have been helpful. You all seem like lovely people - and sound a lot braver than me! Thank you for the nice messages - they really have made me feel better.

There's been some sort of problem with my results since I last posted... I've had three ANA tests done in as many weeks - the first and last came back positive 1:640 but the middle one was completely negative! The doctor said at the time that (on paper at least) I was a fraud but now it's more likely to be a lab error. Do the ANA results flucuate?

Marilyn - I don't know the ANA type but I'll ask on Tuesday. What does the type show?

Thanks again everyone, you really are kind.

Chloé x

Hi Chloe. Yes there are different patterns for different types of autoimmune. Ie scleredoma is speckled. I am not sure of what the other patterns are as my rhuemy never tells me anything. Yes it can show negative or false reading. I am sure cat or someone will give you the lowdown on different types of patterns and what they mean. huggies hon. marilyn

What makes autoimmune diseases so hard to diagnose is that the test results commonly do vary a lot from one time to another! So Your neg ANA happens a lot! Then it will be up next time ect. 20 years ago I had a high ANA that went to normal after a year of "watching it". It was 15 years later before I was tested again. First time, not very high, second time, higher, third time higher still. Dont worry about it. Just try to handle what comes up as it comes. And write again!