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 …

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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

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New from California.

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New from California.

Post by mollyingrid92 on Fri Jul 26, 2013 10:28 pm

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 calf. After doing that on both sides to each knee, he concluded the tendons on the sides of my knees were really weak. Well, I had gone back in about a month telling him about the problems with my shoulders and wrists. He ordered a blood test for all the different forms of arthritis and x-rays. When the test results came back the doctor said that everything was good, except that these antibodies in my blood were high. He explained it to me that I had MCTD and that we had caught is early but there's not much to do for it except deal with the occasional pain and discomfort. Needless to say this doctor was no help for anything No   So after that DR. appointment I got in the car and cried a little bit, I wasn't sure what it was I had. I drove home and hopped on the laptop and googled MCTD for myself. What scared me the most was what could happen when/if it got really bad, with reaching the heart and lungs. It took a couple days for it to proccess. Anyways, now I am switching over to a better General Physician and in the process of getting a referral to a Rheumotologist (sp?). I've accepted having MCTD and just managing the best I can with the pains and going on with life. Smile 

mollyingrid92
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Re: New from California.

Post by Fç on Sun Jul 28, 2013 1:33 am

Don't worry... In time you'll know all too well how to spell 'Rheumatologist'...

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Re: New from California.

Post by Ozzie1954 on Fri Nov 29, 2013 9:04 am

mollyingrid92 wrote: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 calf. After doing that on both sides to each knee, he concluded the tendons on the sides of my knees were really weak. Well, I had gone back in about a month telling him about the problems with my shoulders and wrists. He ordered a blood test for all the different forms of arthritis and x-rays. When the test results came back the doctor said that everything was good, except that these antibodies in my blood were high. He explained it to me that I had MCTD and that we had caught is early but there's not much to do for it except deal with the occasional pain and discomfort. Needless to say this doctor was no help for anything No   So after that DR. appointment I got in the car and cried a little bit, I wasn't sure what it was I had. I drove home and hopped on the laptop and googled MCTD for myself. What scared me the most was what could happen when/if it got really bad, with reaching the heart and lungs. It took a couple days for it to proccess. Anyways, now I am switching over to a better General Physician and in the process of getting a referral to a Rheumotologist (sp?). I've accepted having MCTD and just managing the best I can with the pains and going on with life. Smile 
I am also new here. To be honest it is better to be told that it is MCTD than it is to be told that it is firbomyalgia.

The kind I have can go to either RA or Lupus. It looks like I am hurtling towards RA.

The blood tests that tell you how the disease is progressing are: ANA, RA, and the anti-CCP (I have that name wrong). In my case I was negative for the last one so my last doofus rheumy claimed that he disagreed with my previous Rheumy (I moved) and that I had fibromyalgia. The truth is, I have a positive RA factor that points to RA and I have a positive ANA with speckled pattern.

The good news for you is that you have been caught very early and there is no real need to despair, unless of course you do not respond to the medication. The purpose of the medication is to slow the disease down.

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Re: New from California.

Post by mollyingrid92 on Thu Dec 05, 2013 7:17 pm

How long did it take you to see your rheumies? It's been going on a year now and I'm having trouble getting into see one. It didn't help that my last doctor didn't help at all...but my new doctor is trying. And It's been trial and error with anti-inflammitories....mostly error. But I think I've found one that works half way decent for now.

I am sorry to hear about your RA and speckked ANA. Fingers crossed that you find something that helps with the hurting. And thank you.

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Re: New from California.

Post by Ozzie1954 on Fri Dec 06, 2013 12:14 pm

mollyingrid92 wrote:How long did it take you to see your rheumies? It's been going on a year now and I'm having trouble getting into see one. It didn't help that my last doctor didn't help at all...but my new doctor is trying. And It's been trial and error with anti-inflammitories....mostly error. But I think I've found one that works half way decent for now.

I am sorry to hear about your RA and speckked ANA. Fingers crossed that you find something that helps with the hurting. And thank you.
It can take at least one month to see a new rheumy. In Canberra I was lucky to snag someone who was just brought in by the practice and he was coming from Sydney. However, there is a whole other story to tell about the saga involved, especially when he transferred to Canberra Hospital and opened a clinic there, but at least I did not have to pay for consultations.

It is because I delayed that I waited more than a month to see my new Rheumy. I am seeing him again on Monday. Right now I am in a middle of a flare that is affecting my jaw so the appointment is very timely.

The one in between, the one where I am using a few choice names to describe him told me to make an appointment for a year's time and that was in June. Of course, since then I have had several flares, but what would he care. I think I had a wait of at least two months to see that creep in the first place. I have finally cancelled that appointment. Laughing 

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Re: New from California.

Post by mollyingrid92 on Fri Dec 06, 2013 1:07 pm

Oh wow, you got in to see him pretty fast. It's been almost 9 months and me and my GP are still trying to get me into see one. It might be cause there are so few in the area and all the doctors are sending their arthritis patients so they're really booked and not taking new patients.

I'm glad the current rheumy is working with you a lot better. I think a year is too long in between appointments. The best of luck to you on your appointment Monday! Smile

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Re: New from California.

Post by Ozzie1954 on Fri Dec 06, 2013 5:52 pm

mollyingrid92 wrote:Oh wow, you got in to see him pretty fast. It's been almost 9 months and me and my GP are still trying to get me into see one. It might be cause there are so few in the area and all the doctors are sending their arthritis patients so they're really booked and not taking new patients.

I'm glad the current rheumy is working with you a lot better. I think a year is too long in between appointments. The best of luck to you on your appointment Monday! Smile
Up until recently there was only one that was working on the Central Coast of NSW. He is a total jerk.

Now there are at least 3 others. There is a woman who shares the same practice as the jerk. She might be a lovely person, but if I was to see her and she used the jerk's notes then she would not take me seriously. That is what I have previously experienced. There are two others that have set up in the same area. The one I am seeing also has rooms in Sydney, probably at or near the Royal North Shore hospital. He is a very funny man... nothing like being sent to the naughty corner because I did not bother about blood tests!! Now that is a part of the longer story. This particular doctor knows Chandi my previous Rheumy who is now working in Canberra. As far as I am concerned, the fact that they are known to each other is good news for me.

There was a real need for new doctors to come to the region. If they had not come then I was prepared to travel to Sydney to see one because I was not willing to return to the jerk.

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Re: New from California.

Post by mollyingrid92 on Fri Dec 06, 2013 6:02 pm

That is so understandable. I can't stand jerk doctors. My previous GP was a jerk. So I switched, and this doc is pretty awesome. Sent a referral to UC Davis here in California to one of their rheumys. No word back yet though.
Well, high five for finding a better rheumy!

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Re: New from California.

Post by Ozzie1954 on Mon Dec 09, 2013 12:30 pm

mollyingrid92 wrote:That is so understandable. I can't stand jerk doctors. My previous GP was a jerk. So I switched, and this doc is pretty awesome. Sent a referral to UC Davis here in California to one of their rheumys. No word back yet though.
Well, high five for finding a better rheumy!
I hope that you get into see a rheumy sooner rather than later. You need to get that assessment and you need to be placed on appropriate treatment.

For me, it has been a long time coming to get one of these doctors to fully acknowledge what is wrong.

I get very cranky when they write it off as fibromyalgia. That is the first reason I was cranky with the jerk. According to him, since I did not test positive for the anti-CCP then I could not possibly have RA... yet what he was saying in this blanket statement contradicts what I have been reading. There were other things as well. It was the way that he asked questions, barking misleading questions at me, and getting misleading answers.

During the last visit that I had with him, I mentioned getting headaches. My goodness, the way he asked questions, there was no way that he was paying full attention with regard to what was going on. Headaches have so many causes. It could be something to do with sinuses, but I know that headache and face issue. It could simply be a tension headache. On the other hand the headache could be the result of issues in the neck and jaw. You would never know that from the questions that he asked. The biggest issues I had with him happened to be related to the frequency of blood tests as well as the adjustment downwards of my medication. Also he got cranky because I did not want to take Endep which is prescribed for people with Fibromyalgia, as well as people with depression. It is Amitriptilyene. In my view it did nothing for my condition. I think that this was the medication that I initially had back in 1987-1988 or somewhere about that time. It turned me into a zombie so I did not want to take it again. He told me to take one for about a week and then start taking 2 at night. I took 1 tablet most of the time. When I went back for a visit and said I did not take the 2 or was reluctant to take the 2, he abused me. Then he wrote a letter to my doctor claiming that I had not taken the medication at all... the jerk (please insert a more appropriate word, because jerk is the mildest work I can use here).

When it came to the last appointment that I had with him, I provided documented evidence that I had more than fibromyalgia and that I had generalized arthritis, in my toes, knees, wrists, elbows, hips, spine etc. He told me to come back in 12 months, to get my GP to prescribe the Lyrica and he took no further interest. He then wrote to my GP again, with the comment that the Lyrica is used for fibromyalgia.

When I heard what he had written I exploded and demanded to be sent to someone else. There was no way I was going to continue with that jerk. In the time that I saw him my health had in fact deteriorated. He showed no interest in doing any proper follow-up at all. He moved what should have been monthly blood tests out to being 3 monthly blood tests... I was fed up. At the same time I had several flares of my arthritis including an episode of costochondritis, which affects the rib cage, a flare in my pelvic region as well as more than 1 flare involving my jaw. During last summer I had problems being able to wear shoes because of fluid issues. Last summer was the worst I have ever had the particular issue which I have suffered since I was about 19 years old. So far, so good, I have had some swelling in my legs but not as bad as last year during summer when I could not even get into my shoes.

I am glad that these other rheumies have turned up in this region because we simply could not continue to have a situation where there was only this one jerk. I was prepared to travel to Sydney to see someone, rather than return to that jerk, so yes, I am a lot happier. At least I am getting somewhere now. My medication has been changed again and I am getting some benefit.. except of course the flare that I have just been through.

One more note, in Fibromyalgia one does not have an elevated CRP or ESR.

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Re: New from California.

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