Having a bit of a wobble so just want to let vent in the safety and anonymity of this forum! I was diagnosed a year ago with MCTD overlapping with SLE after having symptoms for a number of years that then all escalated and crashed together in the year before I was finally diagnosed with MCTD.
Reading about other people's experiences I know I have been very fortunate to have supportive GP's and to be under the care of Professor Denton/Dr Ong at the Royal Free in London as well as seeing my local rheumatology and dermatology consultants. I have a lot to be thankful for and have had every test and treatment going to investigate and alleviate my symptoms including an Iloprost infusion, prescribed Mycophenolate, Prednisolone, Hydroxychloroquine, Fluoxetine, Lorsatan, Lanzaprozole, Vit D3, had CT scans, MRI of brain and cervical spine, bone density scan, Doppler ultrasound of upper limb arteries, ECGs, echocardiogram, endoscopy, colonoscopy, nail fold capillary tests, lung function tests and endless blood tests - you name it, I seem to have had it in the past year - so in my case the care I've received within the NHS has been very good.
But today I've just found out the excruciating pain I've been having for the past 5 months at the bottom of my spine and down my right leg is because I have a slipped disc so I have to have another MRI to confirm this and then take it from there but the consultant has already said that given my MCTD and drug regime he would want to avoid any operation for me at this stage as it would mean having to stop taking certain drugs.
It is so frustrating and depressing to have somethng else go wrong with my body and cause so much pain just when I was feeling that everything else was finally getting under control. I just feel sometimes that not only my body is falling apart but my life as I knew it has fallen apart. Everything has changed and it's hard to accept that although, yes, life goes on and compared to so many I am still so fortunate, this life I'm now living is so different from what I knew before in what I can manage day to day and how my previous, very outdoors active life is now so limited.
Feeling sorry for myself which is never good but good to get it all out and over with!