Hello,
I'm new to the boards although I've lurked for several months. I was finally diagnosed about 4 years ago and am now on SSI. I had symptoms for nearly 10 years before that,before anything became specific enough for a doctor to suspect an autoimmune condition, and for the various test results to make sense. In many cases test results can be ambiguous at best, especially if you're in the early stages. Don't expect a confirmed diagnosis too soon, if at all, because there is really very little known yet about this class of disorders. What your doctor comes up with is a 'working diagnosis', and it may be changed as new test results and research is available. In many cases what a doctor does is simply treat the symptoms and see what works, or what doesn't work.
The worst part for me has been the fatigue, the malaise, and the brain fog. New animal research has just been published in the Journal of Neuroscience that may indicate why and how this occurs and may lead to treatments for this. You cam go to ScienceDaily.com and look it up. These findings have brightened my outlook considerably. Hooray!!
My research on the internet has been invaluable to me, both mentally and physically. It keeps me feeling more in control and less depressed. And it also led me to several lifestyle changes that have been very helpful.
I hope this helps someone cope a little better with their battles.
Estatelady

Your right on the mark. It is so difficult for doctors to find out what is wrong . People come in to their offices with a variety of problems and symptoms and inconclusive test results all the time.
I have MCTD and it wasn't found out until last year . Even though I have had RA for years the right test were not done. After the RA was dx'd more diseases and syndromes were discovered.
It is not uncommon for people with auto immune disease to eventually have an overlapping disease. But it is fortunately not always the case. Most doctors won't diagnose you with MCTD or UCTD because of insurance problems. The treatment for the most part with mctd's or AI diseases is the same just about . DMARD's steroid's,bio -meds. In some cases when Insurance companies find out that you have multiple problems they drop the insurance or access to much needed medications.

For me the waiting for the diagnoses took many years. And because it took so long I suffered joint damage as well as other problems. I do understand now why the doctors had such a hard time diagnosing my problems. AI diseases tend to all look a like in many ways .
You know that a duck is a duck is a duck until it turns out to be a goose. That s kind of how AI diseases are until they reveal there true self.

The wait is the hardest. But knowledge is a wonderful thing and also a terrible thing . People go on the internet highway and they self diagnose sometimes . I did this and for me it wasn't a good thing but I did learn a lot about AI diseases .

Thank you for bring up this thread about MCTD . This is rarely talked about here expect for the occational topic of RA /lupus (rupus) or secondary syndrome like FM/CFS or sjorgen's,raynauds. (which of course can also be a primary syndromes too)

Your thread is very helpful thanks .=)

D.

Hi! I am in the same boat with the MCTD. I have only been on the suffering list for 2 years now and they called me MCTD pretty quickly after about 6 months. I am on Hydroplaquenil, methotrexate and naproxene and have gone through all the current TNF meds (enbrel, humira and remecaide) which all aggravated the hell out of my face - rash - bad rash, as in "lupus like syndrome" so it may have exacerbated my Lupus. Now I am having hives everywhere and feeling very itchy, ugly and frustrated. They want me to try Rituxan - I have read some pretty scary things online about side effects and that the infusion takes 6-8 hours - ugh. i am afraid to try it and am leaving in 4 weeks for an 18 day trip to China -YIKES! I am looking forward to my old friend prednisone - I know that can get me through the trip and take away the hives - but can you say FAT? I am feeling that way - this is a tough disease to battle with. Thanks for letting me vent.
Jenna

I've had Rituxan and it wasn't bad. Most people get through the infusions okay. I had serum sickness which is a delayed reaction....it began three weeks after the third infusion. It was awful but thankfully, is rare.

I belong to another board and many, many people have had Rituxan with no problems at all. Good luck with your decision. Oh - it's only the first infusion that takes so long. The rest are faster if you have no reaction to the first one.

Yes!!! You have helped me so!!! Thank you for describing what I am sure we all feel with MCTD and or Lupus!! The malaise, fatigue and brain fog is the absolute worst for me as well.
I was diagnosed with Pulmonary Sarcoidosis in 2004..(Just after I was told I had lymphoma and hospitalized for it) Then over the last 5 years developed Sjogrens, Raynaud's, positive RA factor, Positive Anti-Smith, Positve Anti-Ro SSA...and a ripe old age of 39...Premature Ovarian failure...No estrogen being produced( they call it Estrogen Crash) Talk about losing your mind...
Still I try to have Gratitude every day for the good things and mininmalize the bad!!!
But recently something happened that put me OVER THE EDGE!!!!

I was a Saks paying my bill...feeling a bit energized for once so I tried on some clothes.Usually I bring things home and return what I don't like because I am too tired to try things on in the store after looking around. Long story short...while waiting to purchase jeans...(The saleperson had my card and the jeans I wanted) I told the other sales people I was going to my car to get my perrier..(Sjogrens...I was so thirsty) and next thing I new some crazy lady comes running out saying I stole something.... I thought I was going to pass out!!! Or I was in the Twilight Zone!!!! I said excuse me I am in the middle of a transaction at this very moment...She didn't care!!! Nor would she look up my account history to see that I am a Platinum Saksfirst card holder.... I was detained for over an hour... and treated like a crimina.
She would not let me use the bathroom or speak without being spoke to first...She said, "We can make this easy or we can make it hard which one did I choose....

So sorry I am to broken hearted to continue....