IgG4-related Sclerosing Disease

Hi, my name is Erica829. I'm here because I’m feeling defeated on this night of pain and no sleep. I do have a deep faith. I have so many unknowns and maybe more or a different diagnosis. Diagnosed in 2019 with IgG4 RD, on immunosuppressive therapy since and extremely high crp and esr while on all the meds. Disenheartening. God is in control but I feel so lonely and frightened and my family loves me and I continue to fight for them until Jesus says otherwise.#MightyTogether #IgG4relatedSclerosingDisease

There are days I feel like I’m going crazy. I have IgG4RD. I have most probably had it for at least thirty years but only been diagnosed with a name for the past three years.
It’s one of those conditions which changes from week to week, day to day and sometimes hour to hour. That’s what drives me crazy. It’s as if I’m imagining it moving around my body. A different part of me hurts all the time. It doesn’t stay in one organ or part of the body. It shifts like there’s a parasite within me.
I know and appreciate that IgG4 itself is a part of the blood system which means it can be anywhere but honestly, I would just like some consistency or a few hours where it would stay at bay or behave. It’s not that much to ask is it?
I have been diagnosed with at least 18 separate conditions and each one is a genuine condition in its own right. I do wonder though just how many of them are really the IgG4 and if I really need to be seen by six different departments within the NHS.
It’s almost 5am and I’m in whine mode. I do apologise for taking up your time which is precious but the need to rant and rave there.
Thanks for listening. Cx
#IgG4relatedSclerosingDisease