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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Paranoid about Pulmonary Hypertension. Who can make me feel better?

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Paranoid about Pulmonary Hypertension. Who can make me feel better?

Post by StacieicatS on Thu May 02, 2013 12:22 pm

Does anyone know how prevalent pulmonary hypertension is with mctd? I started reading about it and had to stop because it freaked me out. I can't get it off my mind now and I know I shouldn't continue to pick Dr. Google's brain. I have read over and over again that those with mctd are at an increased risk, but haven't seen what % of mctd sufferers actually get pulmonary hypertension.

My brain is in overdrive. Again.

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Re: Paranoid about Pulmonary Hypertension. Who can make me feel better?

Post by kimmieg33 on Thu May 02, 2013 2:02 pm

Dr Google can really freak me out as well. As for me I'm trying my best to develop and keep healthy habits. It's funny you posted this, I just got through watching a video on you tube where the doc mentioned mctd and increased risk of heart problems later. He suggested fish oil.
Sure will be nice as this forum grows to hear more people share their experience. Such a very strange disease Question

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Re: Paranoid about Pulmonary Hypertension. Who can make me feel better?

Post by Admin on Sat May 04, 2013 1:05 am

Hi StacieicatS,
I suffered from a virus over my heart about 2 years ago. Very similar symptoms to a heart attack. SCARIEST moment of my life. This was related to MCTD, BUT as with all symptoms & offshoot problems with MCTD, you just got to not worry about it until it's time to worry because if you do you'll litterally worry yourself to an early grave! I was like this when first diagnosed & it made me more sick. I was in bed for a week & it was sunny outside, I was looking out of the window thinking 'I could be out there playing with the dog or sunbathing or having drinks with friends & instead I'm here sick', I know that we get sick from this illness a lot but I made myself sick with worry. Something had t change. I've found positivity has been the best medicine. I try not to think of it.
I have read everything there is to read on MCTD considering I need to research a lot of stuff for the organization etc & this stuff scares me & freaks me out too, however I have learnt that a lot of stuff on Google isn't always correct.
But the statistics are in our favour: only 13% of people with MCTD go on to develop potentially fatal complications 6-12 years after diagnosis.
So I know it is difficult but instead of worrying, embrace your life & try to stay positive. Take this as you have to live your life doing everything in life you've always wanted to do. Have fun. Stay positive. sunny
& remember the point of this organization is for us to 'pick you up' when you feel like this. Wink

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Being evaluated

Post by LaraC on Fri Jun 21, 2013 2:21 pm

A visit to the pulmonologist this week showed that my lung diffusion is dropping incrementally, he suggested pulmonary hypertension as a possible cause. Next stop an echocardiogram, then if that's ok, a respiratory treadmill test. I'm glad you wrote about Dr. Google, as I will now NOT go that route, have also done that myself tooooo many times and it never ends well. I'll try to remember to check back in here and report in with the results when my tests are done. Echo is scheduled in 3 weeks.

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Re: Paranoid about Pulmonary Hypertension. Who can make me feel better?

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