I just needed somewhere to share my elation!!
I've been having regular flare ups of both lupus and rheumatoid even though I'm on the highest doses of medication I can be on. Everytime I've been for bloods everything has pretty much come back within normal range.
I've been experiencing altered sensations in my feet and legs and informed I had a positive clonus reflex. I'm 33 and have had 3 falls which is not like me.
I managed to get a face to face appointment thanks to my specialist (she's really wonderful). I saw an amazing nurse who I actually felt took my presentation seriously. I've read my referral notes from my own GP to neurology and each one refers to my age and that generally looks well as if dismissing my problems.
However I got a call yesterday to say that my case is being discussed at a biological MDT meeting next week. I've never been unwell and don't want to be so this information filled me with hope. I've never been one to shout the loudest and I didn't need to, just needed a health care professional who really seemed to care.
I also went armed with photos of my flare ups on days where I've had bloods and yet normal ranges come back. Along with notes of new symptoms, feelings and food diary. Possibly also helped that my hands were actually having a good day and she said your hands look sore, I explained this is the best they've been for a while and her face dropped.
So I'm celebrating for being taken seriously and hopefully getting some positive input and help 😁😊
Feeling awful 😣
Negative bloods could it still be SLE
need some advice from you lovely lot.
Bit of advice.....
