Hello everyone, hope you are all having a relatively good day today.
I've not been here for a while as I've been in rather a dark place where things just become overwhelming. Apart from that I had a bad dose of laryngitis which lingered for what seemed like an eternity and my joints and muscles got so bad I could barely walk some days.
As some of you know, a previous barium swallow showed I have an oesophageal web and dis motility. However, another endoscopy and a different doctor said no web, just oesophageal and stomach inflammation and dismotility caused by nerve to muscle messages. I also had a chest HRCT to find the cause of my breathing problems and it showed I have air trapping probably caused by small airway inflammation.
I now know that small airway inflammation is different from small airway disease. I found that out the hard way when an off the cuff remark from a doctor about small airway lung disease and fibrosis being common with CTD. I googled it, followed links and read that I'd be dead in 2 years. An urgent appointment with my GP put me straight that I'd been reading about things I did not have. None the less, fear set in and I think this contributed greatly to my downward spiral.
Added to this was the pain and the fact that every doctor I saw for anything from my bowels to my chest to my eyes, all dithered and expressed doubt with connecting anything to my CTD. The alternative is I have about 30 different conditions which all started together and all flare up and worsen together.
My Rheumatologist said previously that I may have mixed CTD which would include scleroderma but an ENT doctor said that although my swallowing and dismotility is suggestive of it, it would be far more aggressive than mine was. Well surely it has to start somewhere doesn't it, or do we just wake up one morning and go from perfectly healthy to severe aggressive disease? He also said my dryness, stuffiness, Eustachian tube dysfunction, nasal crusts, bleeding, ear pain and face pain were due to an allergy despite my allergy tests all being negative. Different from the last ENT doctor I saw.
Damn these inconsistent doctors. After doing so well and seeming to really be making progress, all this just seemed to send me back to where I was years ago with nothing definitive diagnosed while I get worse and worse. Plus I don't see my Rheumy again till May and my lovely GP is on maternity leave. AARRGGHHHHH
Anyway, I'm slowly getting myself back together and at least now all the tests are over I can finally go back on my wonderful Prednisolone. Just have to have a quick blood test pre pred in the morning and I'm good to go.
I have missed you all and it's good to be back. XX