I've re-named the condition. Why?
I was diagnosed in July GCA (giant cell arteritis) and PR (palindromic rheumatism) and commenced on 60mg pred.
I was referred for a battery of tests, including MRIs, CTs, Nerve conduction studies, DEXA, x-rays and BTs, which have been carried out over the past 6 months,
I have been referred to endocrinology (hypothyroidism), ophthalmology (GCA), Neurology (spine), Respiratory (recurrent chest infections)
During this period I have encountered numerous "symptoms:
lower back pain
recurrent chest infections
cracked ribs due to coughing (osteopenia)
fractured right arm (blackout)
various wrist and ankle fractures
Irritable bowel syndrome
hysteria and even,
steroid induced psychosis
When I was going mad (through being on too high a dose of pred for too long) my rheumatologist looked at the MRI of my brain to convince me that nothing was wrong. The report confirmed "no significant abnormality". Brain still intact.
My eyesight continued to deteriorate and about a month ago, I had a really sever headache with loss of vision for 10 minutes or so. It terrified me. I rang my GP and was told to get to A&E immediately and tell them I was GCA, which I did. 4 hours later still waiting to be seen. So I came home untreated.
Had further appt with Ophthalmology the following week. Repeat eye test. As expected, vision really deteriorated. Blind in left eye. Consultant couldn't understand how my sight had become so bad in such a short space of time.
When he checked brain scan report. He said I had had multiple strokes, the last one being when I lost my vision!!!!! I was absolutely shocked, angered, scared. I was previously told scan was normal!!!
When I lost my sight with severe headache I was actually having a stroke in A&E and they didn't even notice.
Anyway, as well as that my lung problem was getting worse. I really could not breath. Was put on nebulised steroids, really strong abs and told I had bronchiectasis! Again what a shock.
The thing is, my chest problem seems to have resolved. I can take deep breaths without pain. I've not been able to do that for years.
Now my lungs are ok, my spine is crumbling and I have to have cervical and lumbar disc fusions.
And around my body this dratted disease goes.
Thants why my illness is called Kaliedoscope.
One picture overtakes another and keep s repeating.