I like being honest here, But I'm really stating to depress myself. Oblivious, well not oblivious, just no one believed in me for like the last 12 years was more comfortable only dealing with one shock wave at a time. On a positive note ... no really its over there to the right in a box >>>>>>>>>>>>>>
Reminding me to be positive

I have ILD as a result of the mctd. It is a roller coaster ride in the beginning of the dx phase. Just take it a day at a time and try and think of all the positive things in your life.....sometimes its hard but there are always positive things if you try.

When I was first dx, I started to meditate and it helped a lot. I have suffered from depression and some anxiety and the meditation has helped. I also started yoga, anything to reduce stress.

Good luck
Beth

They are probably testing you for antiphospholipid antibodies, or "sticky blood". It can go hand in hand with lupus. It causes blood clots and various other things. They may end up putting you on a blood thinner of some kind. I don't know much about interstitial lung disease, but I have heard about it before, so it probably goes right along with mctd. I am going to be having a lung function test soon, and I know it's probably not going to be good...trouble going up stairs and running around with the kids.
All of this stuff is likely to drive you nuts. Seems like they neglected a lot of stuff with you for a long time and now they are covering their butts. I know though that some people can have a lot of symptoms without having positive antibodies so they don't like to diagnose without those. For me though, I had barely any symptoms and I had the antibodies. Was quite a shock to me to get the diagnosis, but now it seems like I deal with one symptom after another. Didn't help that I had a really bad flare this summer.
Good idea for you to keep copies of your blood tests and any other tests they do for you. I started to do that about a year ago, and it's nice if you don't understand something to be able to look it up yourself or ask questions about it. I have a file folder that I keep everything in, and it's getting to be quite thick. I go tomorrow to my new rheumy to get the results of all the blood tests that she had run. More stuff for the file!
-Kate

Oh, I was going to say that you need to talk to Beth, I know she has lung issues, but then she got her post in while I was typing up mine!
-Kate

Im waiting right now for insurance to cover the check of my arm, its turned my whole forearm red now and is 4 different vessels. Im not going to the er, it started 4 days ago. @brunob I'm from Louisiana, I wont say I'm dumb but I'm ignorant to meditation and not a prayer. I have no idea what it means. and 4 kids and everything else. My titanium hip, that a PA called and said my blood work was ok, was wrong. The Doc called last night at 7pm and said my chromium and sumthing else were high so he wants a recheck on my hip recall. said that to say I could never get into any of those positions. ty both for answering

I'm getting aggravated , 3 now, top side and bottom now, called the doc got an answering machine. 200$ to go to the er for a test they may say is superficial.

Go figure. They aren't clots. They look act and hurt like clots. They only ruled them out as clots, but they saw them and know they are there. Whatever they are.

How about erathema nodosum? Hope I spelled that right. They are red nodules caused by autoimmune problems. My aunt had them sometimes.
Mary Ann

They called tonight, The Internal medicine doc says it's Perifrial Artery Disease because the viens are hard, swollen and painfull w/ fever. He contacted the Rhumatologist who worries of infection. guys and ladys. This is starting to be to much to share. It felt good at first, a relief to get it off my chest. But the flood gates have seemed to open and now Im trying to dodge diagnosis instead of hope for one. and as much as im honest and typing, I dont want a 24 year old girl reading the stuff thats happening to me and believing all these things are going to happen to her (or him). I think for a while Im just going to read the post, maybe say hello but stop passing all my info, my stuff is just strange

The disease varies form person to person. You are just having a bad time right now. Have faith the Dr will be able to improve your health. Sometimes optomism is a positive force.
We are still here.
Mary Ann
P.S. Pay attention to the Rheumatologist. I have seen a lot of Peripheral Vascular disease and this does not sound like it to me. But I could be wrong. Have been before!

Wise words, MT.

I've had a couple of rounds with this illness where I really thought maybe my number was up.

Remember, you could go into remission, and have most of the symptoms go away for weeks, months or even years.

Don't worry about freaking us out. We're here to listen.

--Cat

We have all been freaked out at one time or another, so don't worry about scaring us. The first time one of my doctors mentioned a lung transplant......I freaked out big time....I had my whole funeral planned and everything. That was a year ago, and I'm still doing okay.

As for meditating, I don't know if I do it the 'right' way or not. For me I just try to spend some time each day being quiet, and try not to think about anything.....I have some music that I listen too, its very soft with chimes and bells and things like that.....very new age kind of stuff....lol.

We are here anytime you want to vent ....we've all done it!

I hope you find some relief

Beth
XO

It's not getting better. I thank you all for the window to my own soul. I got miss information from my rhumys nurse on how and when to start Cellcept (I read its an anti rejection drug) and I have an infected toenail. Now that we have started it we have to keep going, and I will get the toe lanced Tuesday. Ive gained about 14 pounds putting me close to 300 pounds 6'1" and in all this my pulmonologist told me to lose some weight. I start reducing the 80mg pred to 60 in 2 weeks. The blood clots that arent blood clots but some have blood clots but there not veins of interest that are plugged. The internal looked at them and said, ok, if there not clots its Vasculitus. Which is inflamation of the vessel walls. SO theve added another diagnosis to my mixed, which Im ready to change the name to something people down here in louisiana can understand. SGSD Sickly Gumbo Swollen Disease. Im going to start taking pictures of things and posting them. LIke the clots. Long red swollen lines, thick as a finger with a hump on one end. 2 in my arm now one on my leg. but my big question is. Im have started this new med, to get off the pred, because my inflamation numbers are close to what they assumes baseline. But if thats true why would I have these tremendously painfull 6 to 12 inch long Vessels, swollen red and with fever at the location. Im lossing faith in my rhumy , Ive had about 5 in 12 years and this is the first to see anything. Im going to start looking up diets tonight or tomorow. as far as exercise when I try to do almost anything I get a strange winded feeling, My neck and shoulders feel bad for lack of a better word. and then I just have to sit down. (just so everyone knows, I was active 6 months ago) Roco rescue http://www.rocorescue.com/training-courses/rescue-tech-iii-certification
http://en.wikipedia.org/wiki/Certified_first_responder
http://www.hazmatsolutions.net/HazMatTraining/index.htm
and that was my volunteering
My wife gave it to me yesterday, she has been needing to vent. I asked her to join this group to so she could see all the similaritys. rant\ lol
splitting my 80mg pred 2 20s at 6am 1 20 at 1:30 and last at about 7pm has helped with my joints at night giving me alot of relief. so thats positive.

@Cat Im hoping so, in fact for the last 10 to 12 years through records we've proven that steroids have normally been all it takes to make me not have (the flu for the last 10 years, Pneumonia 4 times in 4 years,congestive Heart failure 5 times or so in 10 years) But for some reason this time it isn't working. ive asked the rhumatologist to just give me a dose pack, a shot and antibiotics for 3 weeks or so but no luck
Till now the joint pain was all because I worked out to much in my youth competing body building and just over did it.

My lower back has started hurting now. Im thinking its because im not exercising my stomach and my weight. at least I hope. and the top left upper quadrant of my stomach is distending. (poking out)

im considering running (lol) driving to john hopkins. They have a huge dept that isnt specifically MCTD but is sculaderma

they were sugested by my insurance company that then told me they were out of network.lol go figure

I know how you feel, like wait wait, let me deal with them one at a time. Mine came about a year apart and that still wasn't enough time to absorb all the ramification of each new problem. Hang in there and really talk to your rheumy, they are great docs. Write down all your questions and don't leave til he answers them all. Do some online research,but don't believe everything you read.
Good luck