MCTD Support Group

Morning!

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

Hi MT and Kristen!!! I have had elavated anas since i was in early twenties.Suggesting lupus. Would have periods of joint swelling and pain especially in knees. I was diagnosed with lupus 12 years ago. At that time tests indicated I had acute Lukemia. After doing a lot of tests including bone marrow I was diagnosed with Lupus.Discoid was ruled out. Had the butterfly rash. Now new rhuemy says scleredoma and RA. I have no faith in him at all!!! I also was diagnosed with fibro and cfs when I was 40. Have had raynauds for many years. Hope everyone has at least a fair day. huggies marilyn. Kristen that must have been very scary when you where paralized. I was paralized for one day from waist down. No explanation. I do have a very poor medical team at this time.

Hi guys, sorry I haven't been on for awhile. With my Dad breaking his arm, I have been busy taking care of him. Same old, same ole' here though. Hottest time of the year in Texas, every day over 100, thunderstorms in afternoon. Hands feel as if they have a long thick needle inserted in them from the tip of my fingers all the way to my shoulders and my head is aching, but woe is me...LOL...no rest for the weary. Husband is in Korea for work and my Dad's arm is still broken...LOL...as a Mom, I gotta take care of everyone!
Cheers to a pain-free, happy day for everyone!

it was scary. I had a visiting physical therapist come to the house one day she was here and i could not walk without assistance, the next time i was able to get around, not dancing but getting around just the same. I always thought i recovered pretty well. i knew the strength was never all there(saw it when i skied, it was hard to turn) but i was proud of the progress that i had made.

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

hello everyone. Been away for awhile -- at the beach in NJ - it was a fun time for all, and I am happy to say I felt better the last few days than I have in months. (Is this what's called a "remission"?) - it was a welcomed relief. Good to read all your posts. MT - I liked the question you started the day off with - I have been wondering about everyone's different situations and found it interesting to read and continue to realize how much courage you all have and how inspiring you are. Momzor, welcome back - hope your dad is doing better. Chloe - welcome to the group. I am in a similar situation - diagnosed just a couple of months ago and still figuring out how to adjust to all of this. This site has been a great source of info, relief in knowing I'm not alone, really good people and positive attitudes. Cat- didn't see you post today, but read your "monologue" from a few days back and laughed and laughed....I loved it. Thank you for the insite and your really great way of putting it all!! :)

Josee - not sure if you are on today...but thinking of you and wanted to say hi and send big hugs...hope you are feeling ok....

Morning, folks!

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

Cat - you mentioned that your lupus-like symptoms were mostly "connective tissue"....can I ask what that means? Mostly aches/pains or ??? Just wondering if it's similar to what I am experiencing....

Hello everyone.....
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.

Hi everyone sorry I did not read this yesterday I was so busy getting ready to leave for reunion. Found thiw so interesting had to respond. I love all of your attitudes you each one manage it all in your own way. We will not let this MCTD take us down. Well I was only diagnosed a little over two years ago with the speacle test but when I was about 9 I almost died from hypatitus high fever for a week. After that it was just always weird thing I have had swelling redness in hands for years thought it was allergies. I am allergic to evry thing. Went blind for about 6 months in my 20s thye thought it was allergies. I had three kids before I was 20 years old. I got streep constantly oe time I got so sick I could not moe fevers ect then mucles would not work Dr. said it was streep in whole body. My hands have been numb for 15 years they said tendonitis. I have tested possitive for RA. Sine MY baby now 4 was born everything was hard during preg we both almost died during birth I have gone down hill. I am 46 I know look bake and see the lupus and RA was there all along . I have almost dies twice from allergic reaction to insects and MSG. Now fighting with thyroid problems as well. I have not seen a rhummy but I may soon. I dont like DR.s and not fond of takeing meds. lvoe to all Jamie