MCTD Support Group

I hear you! I feel very fortunate that I haven't had that level of pain. My flag to watch for is my platelet number--when my inflammation gets raging, my platelet count drops and then I'm at risk for bleeding without stopping. Thank goodness we caught that before it caused severe problems for me.

Are you being cared for by a rheumatologist or a more general physician? It sounds like you have a lot going on. The different diseases you have might be related in a way, all an outcome of inflammation. A rheumatologist would be the best for that. I needed a rheumatologist for sure. The type of doc you have can make a huge difference.

I've been on prednisone (that packs a punch) and hydroxychlor. I'm trying to get lower on prednisone, but that's been a slow road.

Do you notice any triggers or any days that are better or worse?

Because its a BRAND NEW community we will have to entice others away from lupus, etc where they were before this community started
Dr O.

Here's an idea for a discussion: working. I am a nurse, and have really struggled to continue working, trying various positions in health care, teaching, etc. The LEAST understanding people re: MCTD have been the health care places I've worked for-nursing cares more about a warm body than having an excellent nurse connecting with and caring for patients. I'm about ready to give up. Yet disability will force me to sell my home, find a place to live with my 2 dogs-I will NOT give them up! Has anyone else had problems with career, insurance, etc related to MCTD?

I'm undx'ed for right now but my Dr is really leaning toward Lupus or MCTD. My symptoms seem to cover Lupus, Vasculitis, Sjogrens. That's why he's confident we're looking in the right area. I too am in pain daily from joint pain, muscle cramps-spasams, fatigue is the worset.I haven't been able to back to work since September so I'm still on sick leave. I have had issues with my platets in the past. I had two plasma transfuions at different times. The first time was after I had my 3rd child then just 4 years ago prior to my Hysterectomy. My gyno thought I would bleed out on the table. My periods were awful to the point I bled 3 weeks heavily like flood every month. I was very anemic and my platelets were very low. I had to beg him to do the hysterectomy. This is when it was first discovered I had some sort of autoimmune disorder. So only now all my symptoms are making sense.

Git-- do NOT give up. Confront your bosses, tell them what you are living with, give them a list of your accomplishments, and ask them why they will not accomodate your disability. (This is not actually threatening a lawsuit, but they'll get the picture.) My former employer gave me all kinds of crap about having a slightly erratic schedule-- we're talking late 20 minutes one day, working an hour late on another, working regular hours most of the time, occasionally leaving early when I had a flare up and making up the time later. And I got a LOT of work done for those guys.

So I got another job in the same field-- and now I am running the place. Everyone knows I have a serious medical condition, they totally respect me, it's a whole different deal. I work 10 hours most days, but if I feel bad, I can take off half a day. And if I feel GOOD, I can take off half a day-- to go skiing!

As far as how you let your NEW employer know you have MCTD... ah, now that gets tricky, but you can make that work, too. Another discussion!

I think no one knows about this site because it is listed under Allergies. Should be under Autoimmune Disorders.

I agree that this group is needing to be under auto-immune disorders......that would be easier for people to find it......until I read this discussion & your info I had never heard of UCTD.....this is new info for me........your symptoms & pain are quite similar to mine & I am sure similar to many others......I would like to know what lab tests you had done that confirmed the DX of UCTD?????

Hi Aspire. They are leaning toward scleredoma or UCTD for me. I was diagnosed with lupus 12-14 years ago. Now it is showing as scleredoma. I also have raynauds and RA. I now have sores on fingers and hands are always blue and white to red it seems.Scleredoma Board extremely quiet.Yes we need to get the word out and it sure shouldn't be listed under allergies!

I tend to spend a lot of time on the lupus board as well. I was just recently given the diagnosis of MCTD. I started plaquenil 3 weeks ago. I am a nurse too and working full time. It is really getting tough. I would also like to see more discussions. I wish I could just find more info about MCTD.
Lise'

A lot of nurses on this post! I too am a nurse. I work 3 days a week in a cardiac rehab program. I dont think I could ever work on the floor again. My body wouldnt let me. I think we all have to think about our limitations. Some days the pain is terrible, others, I feel great. People talk about going through a flare. Maybe I have never had one because all I have are daily ups and downs. People dont understand sometimes, even if you explain. They understand cancer, diabetes, but this seems to be voodo. I told a woman at my church who was pushing me to be more active. She just looked at me and said, "I guess how a person looks doesnt mean anything". Sometimes I can hide the pain and it seems no one knows. Other times, I guess it is obvious that every step is agony. I am trying to keep going but get more tired of doctor visits than anything. My rheumatologist is the only one that puts all my symptoms in one bucket and I think most every problem I have is related to my MCTD. Why is it that we call it MY DISEASE, like we own it, or does it own us. Well, I am rambling. But just food for thought.