Grateful to have found this forum. I've been reading so many stories that resemble my own.
20 years ago, November 2000, was the first time I became so ill. What I thought was a virus, ended after a month with severe hip impingement.
After that I had regular bouts of sickness that had strange and random symptoms.
Mostly pain and sinus/mouth ulcers and anxiety.
In March 2011 I was so ill and had severe swelling with petechiae rash etc. I had an appointment with head of Rheumatology in Calgary. She immediately said wegeners and wanted to keep me in hospital but I needed to be home for daughter so she called my gp and talked him through prednisone treatment.
I did the treatment 3 times over the next year. And it definitely helped with swelling.
I went back to see a different rheumatologist after that, at the time bursitis in my elbow was an issue too and the only thing she said in my 3 minute appointment was my nurse will show you arm exercises haha I guess that really turned me off of driving 3 hours to see any more specialists!
After that my go said I was his mystery patient and all he could do was manage my symptoms. My biggest concern was the kidney pain and blood in urine.
That's how I've managed until this day... treating my symptoms.
I have spinal stenosis and get epidural injections for that which actually help me overall with other symptoms.
It's been a tough go and since this past December I wake up so sick at least 3 times a week,
Migraine, neck pain horrid face pain, nasal sores, mouth sores right leg swelling, petechiae rash on back of legs and my back shots are wearing off.
I wake up sick, take Rizatriptan wait 20 minutes later 3 advil, hot shower netty pot and tons of water until the nausea passes. It gets me to work so I'm grateful for that.
I feel like I'm fading... maybe I just need to winge ha.
I was just curious if others just manage symptoms?
I dread taking prednisone again...
Thanks for letting me join and reading my long story...