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
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Another Australian story

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Another Australian story

Post by Ozzie1954 on Fri Nov 29, 2013 9:50 am

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 files, and within a few weeks my shoulders were in solid lumps. I went to the doctor, and he said he could see what was wrong so he did not have to do a further physical examination. From that point there were blood tests where I came back with a weakly positive ANA. He thought I might have AS because my RA factor was negative, so he sent me to a Rheumy, and I had further tests including a bone scan, which did in fact show some inflammation, plus it noted a difference in my SI joints, but that information was ignored. This man said that it was fibromyalgia. Yeah, right. He gave me some medication that made me feel like a zombie and told me to go exercise.. and to get out. To cut this part of the story short... his partner a few years later looked at his notes, refused to give me an injection in my shoulders and told me to get out.

In between seeing those extremely rude individuals I saw a Rheumy in Townsville. He disagreed with the Fibromyalgia diagnosis, and stated that I had an underlying arthritis, but he could not name it. During the time in Townsville, during the wet season I had a very bad time and had difficulty doing things such as putting washing on the clothesline. When I did that task I would end up lying down because I was hurting so much. The dry season was great and I was getting up and swimming at 6.00 a.m. in the morning, as many days as I could manage. It was great!!

After I left Canberra where I had struck those horrible men, we moved to Sydney. By this time I had issues with my wrists, ankles, finger, elbows, shoulders, and of course my hips and lower back. As a way of explanation here, at age 22 I had slipped on stairs and fractured my coccyx and that took a long time to heal. At the same time I had 3 children, and then whilst living in the USA I had a fall and popped a small fracture in my right elbow. All of this came back to bite me... Also in Canberra I continued to have many falls and sprained my ankle. One of the sprains was so bad that for the first time I ended up with bruising, and in truth I probably popped a small fracture in the side of the foot (it did not show up on x-ray).... sorry for the digression but it is part of the whole picture.

I saw 2 more rheumies whilst living in Sydney after I had a new bone scan that showed up lots of inflammation. The first man said I had generalized osteoarthritis. The second (I went to him for a second opinion) just said I had a non-degenerative form of arthritis. There was no further explanation and he suggested hydrotherapy. Yes, hydrotherapy is worth the expense.

In 2007 we moved back to Canberra and once again a new doctor sent me to a new Rheumy. The practice, which is run by a female who is the Professor of Rheumatology, is a very busy one. I was assigned to the new guy who was coming down from Sydney on Fridays. I have to give a big thank you to Dr. Tymms and to Dr. Perera because I did get a proper work up at last and a diagnosis which was MCTD.

It is funny because I always said that Fibromyalgia is the nothing diagnosis and my doctor said that MCTD was the nothing diagnosis. Either way it is a recognition of the underlying problem that had been missing since 1987. I was told that I could end up with either RA or Lupus, and as it turned out I have been heading towards RA with my indicators becoming stronger over the past few years.

About 2 years ago I was classified as early RA. I am not able to have sulfasalazine, and neither can anyone who has a high ANA. I was placed on Plaquenil and had that for a few years. I am still taking Plaquenil. I was placed on Methotrexate and had a regimen put in place with regard to when I took the Methotrexate, followed by the Folic Acid during each week.

Then we moved to the Central Coast. I am blessed with a very good local doctor. However, he sent me to the Rheumy in Gosford and this man had me totally furious. The first thing he did without so much as an examination was to throw out the RA diagnosis and told me that I had Fibromyalgia. He insisted that I take a certain medication. I did not want to take it because of my previous experience with whatever it is they prescribe for this particular issue. On the next visit he abused me because I had been reluctant to up the dose of that medication to 2 per night and then he wrote in the letter to my doctor that I had not taken that garbage!! The relationship continued to go downhill. He lowered my dose of Methotrexate and took me off Plaquenil.

A few things to note here: under the regimen established by the previous doctor my RA factor had dropped from 64 to 39. However, when the medication was altered my RA factor increased again to 49. My ANA has remained consistent and it only hit 1240 the one time (do you really want the whole story? I think not. It is enough to say that the Dr. Perera took me off Sulfasalizine as soon as he saw that ANA reading). My CRP and ESR have remained consistently high. The other thing to note is that if it was only Fibromyalgia then I would not have any of these indicators!!

After telling my local GP what I though of that Rheumy he sent me to a new guy. Thank goodness!! The new Rheumy told me that in fact I have had RA for several years. He put me back on Plaquenil at double the dose, and he doubled my dose of Methotrexate. I need to stick with this for 6 months before being placed on a list to receive other treatment with a biologic.

I have my good days and my not so good days. The worst problems are with my feet but when my jaw kicks into gear, then I get an earache at the same time. In the past week I have had a number of issues. It could be partially stress related because we had to take my father in law to respite care, and he did not want to go there.

My story is a very long saga. I have tried to cut it as short as possible. There is much I have not told, including about the second accident where I fractured my coccyx for the second time. I have not worked since that happened.

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

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a follow-up of the continuing saga

Post by Ozzie1954 on Fri Dec 27, 2013 3:49 pm

The big news for me happened to be that the new doctor said that I had RA for more like 20 plus years. Looking back I think that he is correct because each little piece of the puzzle is finally coming together.

However, one of the bigger pieces of the puzzle was sticking out like a sore thumb and it has only been within the last few weeks that my G.P. finally diagnosed that I had hip bursitis in my right hip. I had been complaining about hip issues for a very long time and no one was really listening to what I had been saying. It is the story of my life and I am fed up!!

During the month of November I was in a very big arthritis flare. It is that flare which brought me to this site in the first place. It was striking in my neck and jaw in particular. At this stage I am continuing to wear my dental device because he helps to calm down my headache. When my blood was taken on 21 November, the CRP was 58.3 and that is very high. I had not had any infections.. nothing, zip, zilch. All I had was being sore in the legs, and then it took off in my jaw complete with difficulty in hearing and a Clayton's earache to go with it... nothing more. This is not the first time that I have had this form of a flare, but the difference was the severity and that it was hitting more than my jaw.

I was chastised by my rheumy for saying that I was ok when in fact I was not ok at all. The diary that I had kept over the two month period was illuminating.

As I have been researching the subject of the RA aspects of MCTD, I have discovered a few extra interesting symptoms that I have not personally highlighted to any doctor - dry eyes, dry nasal passages, and dry "female parts". I now understand a little better something about that dryness. It is part of the overall condition and I have had such dryness for longer than I have been diagnosed with RA.

Officially I am now RA based upon clinical observation and MCTD based upon my serology results. I guess it means that the pendulum has finally moved in one particular direction after all Smile

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

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