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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I gave my last doctor the boot

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I gave my last doctor the boot

Post by Ozzie1954 on Sat Nov 30, 2013 2:35 pm

How do I write about this experience and remain polite? It is extremely difficult to have to watch the language because my previous Rheumy was nothing more than an absolute jerk. I have used a very different word to describe him.


I live on the Central Coast in NSW and for a while there was only the one Rheumy in the region. I was sent to him and I will not be seeking a renewal of the referral. He was the third one who claimed that I had only Fibromyalgia, only this time he did not do any kind of test to come to that conclusion. I did in fact argue with my GP over this particular issue, but he did not realize that the Rheumy had jumped to a certain conclusion during the first visit, and not after the ordered blood tests. This particular Rheumy does not follow the proper protocols when a patient is on Methotrexate!! He told me to have the blood test every 2 months initially, then he pushed it out to every 3 months, and wanted a follow-up after 12 months. He also lowered my dose of Methotrexate and took me off the Plaquenil.

[justify]It is the last two things that are important because after he did this, my anti-inflammatory indicators remained high, the ANA did not reduce and the RA factor began to increase again. Yes I saw the blood test results and I know how to make the comparisons. They are also important because I began to feel really lousy after the medication was reduced. I have had a lot of new symptoms.


During the first consultation this particular rheumy bombasted me with questions and because of his bombastic approach I ended up giving misleading answers, and those answers made me look bad. He did not accept the diagnosis of my previous doctor, which was MCTD moving into RA after about 2 years under his care. This bombastic fool proclaimed that I did not have arthritis and that my problem was fibromyalgia alone.

The second consultation was worse than the first one. The bombastic idiot had prescribed something that I had used in the past and where I had felt like I was a zombie at work (the doctor who prescribed that medication was also a jerk). I was up front about not wanting to take the medication. He told me I had to use it with a dose of 1 initially and increasing it to 2 ENDEP per night. I took one and was not all that willing to take 2 but I did it for a time. The medication was useless and it did not touch the hip issues at all!!. During that second consultation he abused me to my face because I had indicated that I had taken only the one tablet each night. Then he wrote an untruth to my doctor by claiming that I had not taken the rubbish in the first place. I was infuriated when I found out what he had in fact written to my doctor.

Now we come to the third consultation which was in fact smoother. He indicated that I needed a check up for possible heart issues. What he wrote to my doctor though, is the reason that I got so angry that I burst forth with rather unladylike language as I described as being a part of the male anatomy beginning with p. He had almost acknowledged that I had arthritis in that 3rd consultation but in his letter he protested that Lyrica was also for fibromyalgia.

There are now another 3 Rheumies working the central coast. My doctor sent me to the one who knows my previous Rheumy who is now in Canberra. I am happy to make the change and never set foot in that other practice again.

Now I remain on the roundabout. I have a more sympathetic doctor. This one increased my medication. He sent me to the naughty corner because I had not had my regular blood test. He also proclaimed that having sleep apnea is not romantic Smile. This was in his letter to my doctor and yes I think it is funny. This man made the comment that I have had RA for more than 10 years. What a relief. I agree with him. I also agree that I do in fact have underlying fibromyalgia, just not primary fibromyalgia because I have indicators that show otherwise. In time my anger will disappear, but right now I am still angry and this is more than 12 months after I began to see that jerk!!

Ozzie1954
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Posts : 28
Join date : 2013-11-29

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