Mixed Connective Tissue Disease Awarenes
Hello and welcome to the MCTDA forum!
This is a forum for MCTD sufferers, the first of its kind! (to my knowledge).
To be part of our community please click on the register button below.
If you are already a member please login.
For more information on Mixed Connective Tissue Disease, check out the website:
www.mctdaware.co.uk
Please note: this is the first time I have created a forum so if there are any bugs please report them asap so I can fix them. Contact me via email:
mctda@hotmail.co.uk
I hope you find the help, support and information you need and I wish you to be happy and flare free :-)
Abigail -
Creator of MCTDA
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New to Group

Thu May 21, 2015 12:12 pm by leeG

HI All, thanks for letting me join, i was diagnosed two yrs ago, altho had symptoms for much longer and now wonder if the MCTD started in my 30s when i was diagnosed with chronic fatigue. now also have raynauds, hashimoto's, blepharitis (sp?), asthma, and multiple allergies, Plaquinel has amazing effects until i had a severe reaction, and now on Atabrine (quinacrine) but its not as effective. …

Comments: 0

New to group, New to disease

Tue Aug 26, 2014 5:58 am by MissDaisy

Hello,
I am a 36 year old female with 3 boys, ages 4-9, and I work as a 911 Dispatcher. I started having symptoms about 3 years ago starting with lumbar pain. I put it off for well over a year thinking it was just over-exertion. When I couldnt take the pain anymore as it was constant, and even just turning my head to the side caused severe pain. I got to the point that standing, sitting, and …

Comments: 1

How much pain before accepting medication?

Fri Sep 19, 2014 9:46 pm by josephine landau

Hi - My names Jo, I'm 42.
I was diagnosed in January of this year with MCTD, after a year or so of growing symptoms (Reynaulds, aching joints etc) I am a working mum with 2 boys, so my days are fairly hectic.
I take B12 injections for fatigue, Levothyroxine for low thyroid and Tegretol for an epileptic seizure I had 10 years ago -So I was reluctant to add to my drugs list and I declined any …

Comments: 0

Not yet diagnosed teen from Finland

Thu Mar 27, 2014 6:12 am by finnishgirl

Hi everyone!

I was happily suprised when I found all this great stuff for us MCTD patients! And hope to get to know some people with this illness. Because there's not a lot of stuff for us in Finland.

I'm a 15-years-old girl from Finland. I still haven't got a diagnosis for MCTD, but my rheuma specialist has suggested it after many years of different tests. And it seems to be logical, I have …

Comments: 0

Another Australian story

Fri Nov 29, 2013 9:50 am by Ozzie1954

First of all, it is so good to find a forum with people who have been going through the same issues. I was doing a search on earache/jaw pain which is afflicting me this morning and found this forum.

My story begins in 1987 but probably goes back a lot further because of other issues that surfaced in my teens. It started after I had a bout of the flu, went back to work where I was handling …

Comments: 1

New from California.

Fri Jul 26, 2013 10:28 pm by mollyingrid92

Hello! My name is Molly, 20 years old, California resident. At the beginning of the 2013 year I noticed I was having really bad knee pains that would last for a while. When I finally went to see my doctor, he moved my leg around to see how my knee was working. Then he did this weird on where he would put a hand flat on the side of my knee and with the other hand push on the opposite side of my …

Comments: 8

This is all new!

Thu Apr 18, 2013 2:35 am by Admin

Ive never run or created a forum before so there may be some bugs, please let me know as soon as possible so I can correct them! I hope you find it easy to use!
Admin Very Happy

Comments: 9

Hi from Australia

Tue Apr 30, 2013 12:46 pm by gorillagirl

Hi everyone Very Happy

A brief bio. Female, 45, Hashimoto's since young. Started with flare ups after activity, sore joints and muscles, feeling sick, bloods abnormal and high CRP and ESR, symptoms pointed to lupus. Doctor nightmare for some years, the usual, it's just your thyroid and you have fibro, maybe you have narcolepsy, others haven things worse than you blah blah blah.

Found a good GP, …

Comments: 8

Newbie, new to the dx, but not to the symptoms

Tue Apr 30, 2013 2:20 pm by Lenorekitty75

Hello Everyone ! Smile

Just came across this site today. Which is odd because I've been googling MCTD for months now. It's nice to know there are others out there in the world who could relate to what has become my life. Although I have frequented lupus and MS boards over the last 9 yrs and had wonderful support.

I am Christina, 37...mum of 3 the youngest is 3 and the oldest is 14. The Dr's have …

Comments: 4

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Latest topics
» New to Group
Thu May 21, 2015 12:12 pm by leeG

» Flare up PLEASE help!
Sat Feb 21, 2015 1:48 pm by aceequine7

» Help with getting a doctor to understand...
Fri Oct 31, 2014 6:16 am by nancehg

» Pain management/plaquenil vision issues
Fri Oct 31, 2014 5:49 am by nancehg

» New to group, New to disease
Fri Oct 31, 2014 5:37 am by nancehg

» Ear ache/Jaw pain - Anyone else?
Sat Oct 11, 2014 8:39 pm by finnishgirl

» How much pain before accepting medication?
Fri Sep 19, 2014 9:46 pm by josephine landau

» Burning sensation and peeling of skin on hands and feet
Fri Jun 13, 2014 4:41 am by Andazi

» Heartburn & reflux
Sun May 25, 2014 8:49 pm by finnishgirl

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Mommy hood with MCTD

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Mommy hood with MCTD

Post by MamaLolo on Fri Apr 19, 2013 12:40 am

First off, thanks so much for creating this site & forum. You are amazing!
So, I was diagnosed about 14 months ago after around 8 months of pain & fatigue that made me feel like a crazy person. I have three sons - 13, 11 & 8. Then on top of that my husband and I were just given custody of a family member's 2 daughters - 11 & 9. These girls have come from a bad situation, but they seem to be doing really well. My boys have learned over the last nearly 2 years that mom sometimes needs a break and there are times when she can't even drag herself out of the bed, but now I have to try to explain all this to the girls. They are so starved for love and attention, they constantly want to be hanging on to my hands or practically sitting in my lap and it is so painful. My wrists & hips are my worst joints I know I don't have to explain to anyone here how tender EVERYTHING can be. Anyways, I was just starting to cut myself a break and stop feeling so guilty about flares causing me to not be the mom I want to be & now all that guilt is smacking me right in the face with the changes in our family. I want to make sure the girls feel loved and at home, plus I need to be sure my boys are not feeling pushed to the back burner & on top of that I work full time as a teaching assistant (24 1/2 school days til summer break!!!). I guess I just need to know I am not the only mom out there who feels guilty and worn flat out... I would love to find some MCTD moms to just share day to day experiences with.

MamaLolo
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Posts : 7
Join date : 2013-04-19
Age : 35

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Re: Mommy hood with MCTD

Post by kimmieg33 on Fri Apr 19, 2013 10:10 am

Hello MamaLolo Smile
I was diagnosed about a year ago. Hated the diagnosis but at least I stopped thinking I was totally insane. I've got a 16, 14 and 7 year old still at home. My 21 yr old son is married and my 25 yr old daughter is married and I now have 4 grandbabies one of whom is 8 months older than my youngest. I take care of my grandmother.
You are most definitely not alone.
I look forward to getting to know you and others who live in this with this strange disease.
I usually tell people my immune system hates me when trying to explain. The kids love to tell people I'm a vampire when I'm hanging out in the shade with my umbrella.
We use a lot of humor around here.
Stress seems to trigger my immune system so the family also jokes that dad doesn't have to beat mom, he can just be mean and her body will beat the heck out of her Laughing
Missing basketball games tonight Basketball need the energy for a busy day with my crazy crew. Storms knocked the power out till 1:30pm so I got a few extra Sleep
flower
Kim

_________________
"In the depth of winter, I finally learned that within me there lay an invincible summer"

Albert Camus~
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kimmieg33
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Posts : 42
Join date : 2013-04-18
Age : 50
Location : Living in the moment

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Re: Mommy hood with MCTD

Post by StacieicatS on Mon Apr 22, 2013 5:19 pm

I have 2 small children (16 months and 4 years), work full-time, and I am only able to do it with a lot of support from my husband and mom. My OB/Gyn finally told me one day that I am a better mom when I take care of myself. And that means taking time for myself, even if it is just 15 minutes. Those words really resonated with me. Now when I'm feeling guilty for taking 15 minutes to myself or sleeping late, I just think about that. It is one of the best pieces of advice anyone has given me. Hang in there and listen to your body.
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Re: Mommy hood with MCTD

Post by Katkat on Mon May 06, 2013 12:50 pm

I am a single Mum of a 13 year old boy with Asperger's syndrome. I work full time, and it can be a real challenge. My son is really great about it in some ways- he gets me wheat bags when I need it, and does his best to understand when I can't do things that everyone else's parents do. I wish he would help me around the house a bit more, but I can't have everything I guess. I don't have family who live close by, and the family I do have, really don't or won't understand this stupid disease!
I think we are all wonderwomen/supermen to live with this disease and remain generally upbeat and positive, whether we have children or not!
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Katkat
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Posts : 20
Join date : 2013-04-18
Age : 38
Location : Australia

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Re: Mommy hood with MCTD

Post by Laurenthia on Sat May 18, 2013 4:30 am

I was diagnosed with MCTD and Fibromyalgia a few months ago but have been dealing with the pain and problems for 4 years. I have two boys 6&7 and they are what keep me going. They do not really understand what is wrong with Mommy but they do know that mommy gets tired easily and hurts a lot. I try to do as much as I can with them but I still feel like a bad mother sometimes because I can't do everything like a normal mother would do. I know my boys are taken care of, safe, and healthy but it is the little things that I don't have the energy for that I worry about. It is hard when they are young and don't really understand.

Laurenthia
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Re: Mommy hood with MCTD

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