MCTD

[Sianied]

Hi everyone, I have just joined this site and I have already found reading the posts really helpful

[Paul_Howard Partner LUPUS UK]

Welcome to the community. I'm pleased to hear that you're finding it helpful already. Please let me know if you need anything and I'll do my best to help.

[serenarian]

Hi, after 15 years of misdiagnosis, mainly Lupus, Scleroderma, Sjorgens etc etc, I was becoming so frustrated at not having a firm diagnosis. I held a senior position in Social Services, my work suffered, my self worth suffered as I was given yet another label and the lack of being able to say with any confidence that, this is what I have, took its toll. I became increasingly despondent, felt like a malingerer, even though I felt like hell and my relationship with my GP was dreadful, mainly because I needed to know what was wrong, he, on the other hand, thought I should just get on with it. So annoying the lack of any proper knowledge out there about MCTD. My response to him was, how can you treat what you don't know? Finally, I have been told I have MCTD and it all slotted into place. The dry eyes, muscle pain and spasms, the recurring AFib due to pericarditis, the swollen salivary glands etc etc of and the fatigue, the godawful fatigue and the blisters, the awful, awful blisters. I am a very positive, assertive person, without this I think I might have gone over the edge. I was medically retired 7 years ago, my salary has taken a £70k hit, my lifestyle has gone from busy, busy, work, work and living in an urban area to trying to make money working from home doing craft stuff. I have little work stress other than not using my skills and missing my job. I go day to day, sleep when I can, insomnia is a huge problem, walking is becoming very difficult, but, I have a diagnosis that I can say this is what I have, this is what makes me feel like I do and my mental wellbeing has improved enormously. I read your first post Sianied and related completely, it was like reading my own symptoms. There is so little known by GP's about MCTD, very few understand the need to have a diagnosis, even if it for Occ Health or for pensions or benefits. I think reading sites like these should be mandatory for those hard to pinpoint diseases. Vent over, back to making stuff.