MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
Morning everyone! Lets try to keep our roll call up so we stay in contact! How about a question of the day? What age did you start having symptoms and at what age were you diagnosed?
I had glumerulonephritis at 2yrs old. Was sick most of my child hood. Then got healthy throughout my teens and early 20's. Started having little symptoms in my late 20"s. Had Raynauds for 2 years, then gone. Fatigue and aching for a year with an elevated ANA. Went away. A rash diagnosed as Rosacea for a couple of years, but it was actually a lupoid rash. Started getting rashes in the sun. Migraines, low white count for 2 years then normal. Ect, ect, ect. Finally, at 51 or 2 I crashed. Such pain! My hair fell out. Fatigue. Bursitis in both shoulders and hips. Had an elevated ANA (speckled) and a positive RNP.
So, thats my story, what is yours?
I had glumerulonephritis at 2yrs old. Was sick most of my child hood. Then got healthy throughout my teens and early 20's. Started having little symptoms in my late 20"s. Had Raynauds for 2 years, then gone. Fatigue and aching for a year with an elevated ANA. Went away. A rash diagnosed as Rosacea for a couple of years, but it was actually a lupoid rash. Started getting rashes in the sun. Migraines, low white count for 2 years then normal. Ect, ect, ect. Finally, at 51 or 2 I crashed. Such pain! My hair fell out. Fatigue. Bursitis in both shoulders and hips. Had an elevated ANA (speckled) and a positive RNP.
So, thats my story, what is yours?
about 9 years ago, i woke up one day with transverse myelitis, and encephalitis, was paralyzed for a short time, then one day, got the feeling back and got some of the use back of my left leg. since then i have had consistent issues with my health. Finally, after years of hearing the long list of things i don't have, RA and Fibro were diagnosed. turns out it is more like RHUPUS, break out into rashes from the sun, the fatigue and the pain are horrendous, the back spasms can stop any time now...I have felt like i have had a dark cloud overhead for so long, but lately it has gotten some better.
My husband and sons are very supportive. I would very much like some of my old life back. I would treat it with such respect, I would not take it for granted again. I make the best of my situation, try to do what i can, and ask for help when I need it.
I am lucky, I have a wonderfully supportive medical team as well.
Kristin
Cheers to a pain-free, happy day for everyone!
a few months ago, i went to a physiatrist, and he reluctantly told me i had not recovered nearly as much as i thought i had. i was devastated. sometimes it is hard to dust myself off and start again. but i try, there is someone that is worse off than i am...the list of dxs is long, the list of issues is even longer. i see it as part of my "charm".
kristin
It is really fascinating to read how everyone's symptoms developed, what we all have in common and what is so much different from one person to the next. I clearly have a bit of the Raynauds, but it's more subtle than it is for you guys, and I never got rashes-- my lupus-like symptoms were always connective tissue. Many of us seemed to get major symptoms somewhere in our teens or early 20s. (Kristin and Josee, however, got symptoms a bit later in life, and the symptoms seem to have come on pretty abruptly for both of them.)
We all have the same kind of headaches, it seems, and many of us have the same weird cognitive issues that seem to affect the same very specific areas of memory and spatial orientation, leaving other mental processes largely unaffected.
Kristin, I was never paralyzed, but as a teenager I remember hurting so bad that I could barely, barely get out of bed, it just took everything I had. My muscles were twitching with excess energy, and my electomyeogram was wildly positive, off the chart, like there was electric current running through my muscles. Now the pain is more joints and not muscles, it's less severe but more chronic.
Okay, I sort of detailed my chronology in my response to Chloe's post, but the basic order of symptoms was:
15 -- high fevers, muscle aches
17 -- short remission after prednisone
18 -- severe pericarditis, but no heart damage
19-25 -- mostly remission, occasional pericarditis but not as bad as before
25-46 -- mostly remission, but headaches and eye problems began presenting gradually.
46 -- headaches worse, massive blood clot which was probably 50% DVT and 50% sports injury-- someone without MCTD would probably not have gotten a DVT from the injury I had
50 -- headaches relatively stable, phlebitis from blood clot, shoulder and hips ache, occasional numbness in arms and legs
Today's okay-- leg is bothering me quite a bit, but once I get moving and distracted it won't be so bad.
--Catalyzt
I was diagnosed 10+ years ago..But was
very sick for 2 or 3 years before that.Also i've had symptoms all my life!!! Anemia,since birth....headaches/vomiting 3 years old,joint pain(knees) 6 years old, I was diagnosed and treated for arthritis in my early
teens..in my 20's had 2 or 3 blood clots...then the fatigue.At the age of 26,all my symptoms just disappeared.For about
12 years i was the very healthy,no symptoms,then shorty after having my daughter
in 1993,the symptoms came back,headaches/seizures,kidney problems,joint pain,FATIGUE,photosenstitive,butterfly rash,hair loss,thyroid stopped functioning,and 3 strokes....ect.ect.ect! To kristin and dallas,i have losted the use of my arms and legs,at times too,i always thought it was the lupus causing it.