I feel completely deflated. Seeing my rheumatologist gave me so much hope that I was going to find out what’s going on and start looking forward to some answers and possible some treatment to stop me feeling so awful. And now I have had it all blow up in my face. My rheumatologist was almost certain I have lupus/ connective tissue disease. Which although I don’t want it, gave me hope that there was some answers.
He was lovely. Very thorough, he said he will be keeping me under his eye as he feels my symtoms definatly lean towards an auto immune.
I waited for my results and letter from him only to read DIAGNOSIS: uncertain. - under investigation but reassuring results so far.
These were my symptoms - what he noticed along with photos of symptoms over time
Facial rashes,Eye swelling, mouth sores, dry eyes, hair thinning on top of head, hand swelling, joint pain, fatigue, weakness on right side of body. (I never noticed this)
My kidney function is now 60% so can no longer take naproxen or any other NSAIDS
my bloods have “returned” to normal limits.
Blood pressure on exam was : 141/101 - I’m normally around 118/70 - maybe I’m just overly stressed. Who knows.
So now I don’t no what to do. They want me to keep taking photos and report back to my gp as soon as I have any symptoms flare up so they can do more bloods.
I just don’t no if I can keep going on like this. Taking photos calling my gp having bloods only to find out my kidneys are crap and nothing else changed. Yeh my bloods go up and down but they never change enough for them to be concerned... so does this mean it’s all in my head. There’s nothing actually wrong?
I feel so trapped in my horrible body
Also.. the other day I was rushed up to a and e with a fixed and dilated pupil. It just happened. I couldn’t barely see through that eye and it scared me half to death. I was diagnosed with a brain virus affecting my optic nerve.... I’m fine now, except I kept getting ptosis (loss of function in my eye lid) - has anyone experienced anything similar and if it really was a virus why did they seem so unconcerned it had reached my optic nerve...
In all honesty I’m scared to death of what the next thing is going to be...
I uploaded a photo of my pupils just for you to see ... as you can probably tell from the photo I am exhausted!