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Scottie55

MCTD - nobody told it was this difficult!

3 posts in this topic

Is there anyone out there who has the same mixed bag as me to share experiences with? Diagnosed with MCTD approx 4 years ago now and from what I gathered at the time this was supposed to be a relatively mild complaint. I want to know what it relatively mild compared to!!!! Over the past 4 years my digestive system has basically given up, my lungs are affected, my joints ache and swell but I continue to do as much as I can. Consultants I have are really good but it seems that they can never get on top of everything. I have markers for Rheumatoid Arthritis, Raynauds, Scleroderma, Sjogrens. It almost seems like they get on top of things in one part of my body and my immune system hits another part. What I have found with MCTD is that outside of my body is not badly affected - people react as though I'm a hypochondriac because of that :angry:. Does anyone else have these issues and if they do how do you cope with them please?

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Hi Scottie55,

 

Welcome to these forums!

 

I'm sorry to hear that you've been diagnosed with MCTD. One of the little idiosyncrasis of these autoimmune diseases is that they affect almost everybody in a different way and so what might appear to one person to be a relatively mild complaint, can actually be very troublesome and life changing to another person.

 

Are you being treated by a Scleroderma specialist? We do recommend that if possible our members do consult one, as sadly many rheumatologists do not have the knowledge or expertise to deal with this complex disease. I've included links to our medical pages on Rheumatoid Arthritis, Raynaud's and Sjogren's which I hope you'll find informative and helpful.

 

Like you, thankfully it's not apparently obvious from my looks that I have a serious disease and I've always looked disgustingly fit and healthy so most people I know really don't think that there can possibly be anything wrong with me and certainly not anything that could potentially shorten my life ( I have lung involvement). I'm only thankful that it isn't worse than it is! ;)

 

I'm very pleased that you've found our forums and joined our community and I really hope that you will continue posting and letting us know how you're faring.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

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International Scleroderma Network (ISN)

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Hello Scottie55

 

MCTD is indeed mild when compared to a complaint which causes a brief period of entire body stiffness followed by becoming totally limp and smelly. This condition is usually referred to as death!

 

I have diffuse scleroderma, also a connective tissue disease and it's no bed of roses, it's no...oh I can't remember the words! Basically it's rather awful and once you get over one issue/symptom/nightmare whatever you want to call it another comes knocking. In fact another symptom often turns up without the exit of another! I was told that my disease plateaus after 3 to 5 years and this appears to be a medical myth because patients tell a different story. Me for one (and I know many others), I am in year 5 and things are worse than at year 2! So much for plateauing!

 

Forget what the medical profession predict, your body is what you listen to, you know if things are worse and I am sorry that they are.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

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(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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