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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Intro- my child has MCTD

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Intro- my child has MCTD

Post by Deetipton on Thu Apr 18, 2013 4:53 pm

Hello! My name is Danielle. Most people call me Dee. I have an 11 year old daughter who was officially diagnosed with MCTD in 2010. Her first rheumatologist believed she had it back in 2008, but he never bothered to run her RNP. He believed that MCTD was "just a little overlap, which we already knew". She had initially presented with arthritis and elevated liver enzymes in 2007. They never suspected myositis. After a few months she developed Raynaud's pretty badly, and her skin was being stretched on her hands and wrists. She was tested for Scleroderma, which she was negative for. When she developed full-fledged Dermatomyositis we changed doctors. She has since been through many CT'S, MRI's, echo's, upper GI'S, etc. Her echo last August showed that she was trending towards ILD. Her upper GI showed that she had esophageal dysmotility and a "patulous esophagus". They changed her from MTX to CellCept, which seems to be helping that a lot. She is also on Actemra, Rituxan, IViG, Nifedipine for her Raynaud's, Mobic, Prilosec, Sucralfate, Prednisone, and iron. I would love to chat with other mom's with MCTD kids, especially those whose doctors feel are trending more towards Scleroderma. We are in the US where there don't seem to be many of us.
I also have a son with PsA. He is ten. So far psoriasis seems to be his worst problem. Lord knows I can't handle two MCTD KIDS! Please tell me I'm not the only one..

Deetipton
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Re: Intro- my child has MCTD

Post by Admin on Sat Apr 20, 2013 12:29 am

Deetipton wrote:Hello! My name is Danielle. Most people call me Dee. I have an 11 year old daughter who was officially diagnosed with MCTD in 2010. Her first rheumatologist believed she had it back in 2008, but he never bothered to run her RNP. He believed that MCTD was "just a little overlap, which we already knew". She had initially presented with arthritis and elevated liver enzymes in 2007. They never suspected myositis. After a few months she developed Raynaud's pretty badly, and her skin was being stretched on her hands and wrists. She was tested for Scleroderma, which she was negative for. When she developed full-fledged Dermatomyositis we changed doctors. She has since been through many CT'S, MRI's, echo's, upper GI'S, etc. Her echo last August showed that she was trending towards ILD. Her upper GI showed that she had esophageal dysmotility and a "patulous esophagus". They changed her from MTX to CellCept, which seems to be helping that a lot. She is also on Actemra, Rituxan, IViG, Nifedipine for her Raynaud's, Mobic, Prilosec, Sucralfate, Prednisone, and iron. I would love to chat with other mom's with MCTD kids, especially those whose doctors feel are trending more towards Scleroderma. We are in the US where there don't seem to be many of us.
I also have a son with PsA. He is ten. So far psoriasis seems to be his worst problem. Lord knows I can't handle two MCTD KIDS! Please tell me I'm not the only one..

Hi Dee, No you are not the only one! I've come across loads of mums who have children with MCTD & the children are so young. It breaks my heart because I know what they are going through. The youngest I came across was 8 years old. So so sad. However I know that right now you need the proper support from a mother whos child has MCTD. I have no children so I cant help you there but I can of course help with MCTD.
When the forum gets more busier you'll get more replies but please ask anything on MCTD & I can answer it. I will put a word out for mums with kids with MCTD. Smile

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Re: Intro- my child has MCTD

Post by NikkiB on Sun Apr 21, 2013 3:43 am

Hi Dee, My son has MCTD as well. He just turned 9 and was diagnosed almost two years ago. We feel this is something he has been living with for years. So much finally made sense. Our primary battle now is the rheumatoid arthritis aspect. We have many wonderful specialists on his medical team near by and at Children's Hospital in Boston. Every day is a challenge and worry for us but he is handling this like a champion. My son is my hero ! The meds are scary and overwhelming but I feel they are working. He is on MTX, plaquenil, Mobic, folic acid. He also has to have meds for his breathing. We are still getting a handle on things. But, our good days outnumber our bad. Smile have to run now but excited we have this forum to connect! I hope today is a good day for your entire family!

NikkiB
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Re: Intro- my child has MCTD

Post by Deetipton on Sun Apr 21, 2013 4:00 pm

Thank you both! I have found one girl in FL who is like my daughter's twin, a boy in Columbia and another baby in Texas. So far that is it... until now! I know of many adults that were diagnosed as kids, including two that are doing extremely well. It seems as though some people have a very rough run through childhood and early adolescence, but as adults their symptoms abate. Lord, I hope that is the case with us. This year has been terrible.

We feel like we have been dealing with this for a very long time. Nikki- Do you suppose your son was born with it? Did he scream all of the time as a baby? I swear, Emily never slept. She cried all of the time. It was terrible.

The meds are scary. We have seen what can happen if the right meds are not used. We had progression despite so many meds! It was unreal. I hope that your son stays well maintained on his current meds.

We are in Florida. We use Shands in Gainesville for our rheumy group. We so love them! We started at All Children's in St. Pete because it is closer to our home.

Deetipton
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Re: Intro- my child has MCTD

Post by SDA61 on Wed May 01, 2013 12:07 am

Hello All.
My 25 y/o/d was diagnosed last year after going through horrible symptoms and then finally a lung biopsy. It's very difficult to see your child go through this, or any pain. I just wish so bad for her that she could have a normal life. I feel for anyone living with MCTD, we are brand new to invisible diseases but it's nice to know we're not alone.

SDA61
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my child was 5 when she was diagnosed

Post by RondaT on Fri Aug 30, 2013 12:30 pm

Hello Everyone-
My child was officially diagnosed with mctd in 2012 when she was 5 years old, though we now know that she began to experience symptoms at age 4 1/2. The summers are the most difficult for her. She primarily experiences joint pain which at times can be debilitating. She also has Sjogrens, and Raynauds and has developed gastritis from being on long courses of prednisone. Right now she is on her third med (Arava) to control inflammation (courses of methotrexate and Imuran did not work for her). We are prayerfully hoping that this will provide some sustained relief for her. She is beginning to sense that she is 'different' from her brother and sister and other children, as she notices that the they don't have to go to the hospital as often as she does, nor do they have such horrific bouts of pain. It breaks my heart to see her unable to engage in activities because she is unwell, or worse, to push through the pain only to 'crash' later on that day or the next. We have a great team of Doctors at Children's Hospital Boston and for that we are grateful. I would love to connect with other moms that are dealing with this and to have my daughter connect with some children that know what it is like to live this on a daily basis. I'm really glad I found this forum!

RondaT
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