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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» 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

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Statistics

Post by mollyingrid92 on Thu Dec 05, 2013 8:06 pm

I have been looking all over the web, like a chicken with it's head cut off, and I keep running into the same stuff over and over again.Mad The only stat I can find is the stat on "overall the 10 yr life expectantcy is 80%" 30% of people are affected with the lungs..etc. you see where I'm getting with that.
What I'm wanting to know is the x out of every X men/women have mctd in usa, canada, europe. something like that. I am actively trying to pull facts together so that I have all the correct facts for when I put together a funraiser for donation money for the lupus foundation of america. If anyone knows anything, please. Any info will be greatly appreciated❤  Like a Star @ heaven  santa 

mollyingrid92
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Re: Statistics

Post by Ozzie1954 on Fri Dec 06, 2013 12:18 pm

mollyingrid92 wrote:I have been looking all over the web, like a chicken with it's head cut off, and I keep running into the same stuff over and over again.Mad The only stat I can find is the stat on "overall the 10 yr life expectantcy is 80%" 30% of people are affected with the lungs..etc. you see where I'm getting with that.
What I'm wanting to know is the x out of every X men/women have mctd in usa, canada, europe. something like that. I am actively trying to pull facts together so that I have all the correct facts for when I put together a funraiser for donation money for the lupus foundation of america. If anyone knows anything, please. Any info will be greatly appreciated❤  Like a Star @ heaven  santa 
I think I have a longer life expectancy than 10 years!! Razz 

I was finally diagnosed in 2008 with the MCTD but I had it for at least 10 years prior.

Perhaps it is how it develops that makes the difference. If one heads into RA then the possible symptoms are different than if you head towards Lupus.

I know for example that my lungs are fine Smile and my heart is also very much ok. I do have obesity but I do not have diabetes at this point in time.

Ozzie1954
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Re: Statistics

Post by mollyingrid92 on Fri Dec 06, 2013 1:15 pm

Yeah, I had noticed that a lot of people were 11+ years and still going. I'm not sure where those doctors had gotten that number. I want to know an estimate ratio of diagnosed people there are in the world to people with out it. I know it's a fairly rare condition but a number would be nice. But then again I am a person that likes numbers and percentages.

I too, haven't had any significant lung problems besides a case for brochitis in the 5th grade. I have been having little coughing fits lately so I might be talking to my GP about that when I see him thursday.

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Re: Statistics

Post by Ozzie1954 on Fri Dec 06, 2013 5:47 pm

mollyingrid92 wrote:Yeah, I had noticed that a lot of people were 11+ years and still going. I'm not sure where those doctors had gotten that number. I want to know an estimate ratio of diagnosed people there are in the world to people with out it. I know it's a fairly rare condition but a number would be nice. But then again I am a person that likes numbers and percentages.

I too, haven't had any significant lung problems besides a case for brochitis in the 5th grade. I have been having little coughing fits lately so I  might be talking to my GP about that when I see him thursday.
lots of laughs about your love for numbers and statistics.

Actually, I think you are on to something. When I was diagnosed with MCTD I did the Internet look up and at that time it talked about such things as Marfan's disease. It also talked about other things such as dermomyositis (sp). It did not emphasize either RA or Lupus.

There is another disorder called Rhupas which is when you have both Lupus and RA.

When MCTD was explained to me by my doctor, Chandi, at the time, he said I could still go either way to Lupus or RA. I have some Lupus indicators but I think I have more RA indicators. From the beginning of my fight to get a diagnosis Lupus has been a factor or has been mentioned. In those days the reading for a positive ANA was at 40 which is where I was when it started in 1987. Prior to that time I had indications that something was wrong because of issues with my feet (those feet again).

It was in the 1980s that they began to recognize fibromyalgia. The first rheumy I saw, after doing various tests including the whole body scan which showed some inflammation but not a lot, and also indicated something happening in my SI joint that was totally ignored by the rheumy said it was fibromyalgia, he gave me something that made me feel like a zombie after I had taken it, and he told me to go exercise and get out. He had not a single clue about how difficult it is to exercise with sore feet and sore shoulders!! His partner a few years later also told me to get out and refused to give me an injection in my shoulders. The shoulders are a whole different issue!! In between those two I saw another Rheumy when living in Townsville. He was the first to say no, it was not fibromyalgia and that I had some kind of underlying arthritis. Other than ANA I had no other positive blood tests. Even the RA factor was low at that point in time. It began to climb and by the time my diagnosis changed in 2011 to RA my RF test reached 64. Once I began Methotrexate it dropped to 39. Then I had to move and ended up with the twerp in Gosford!! Another possibility for me was AS but I did not test positive to the HLAB27 gene. Again I think this is irrelevant because people can have AS plus RA plus Lupus. If you have Lupus I think that the outcome is probably worse than having RA.

During the whole of my saga the worst that happened to my lungs has been bronchitis. My heart function is good. However, I have put on more weight than I desire.

What all of this means is that a lot of these doctors are in fact second guessing or at least they are not making distinctions with regard to what is now included in MCTD.

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