Hi everyone,I did post here a few months ago on behalf of my daughter,who like so many have had a nightmare trying to get a dxs.
Then a few months ago. She was finally told that she had severe systemic lupus,well now she is being told that she is being treated for lupus but they don't think she had it,no one can find the bloods etc that she was dxd with,and now she has blood tests each week or couple of weeks although she had high inflammatory markers,she had NO lupus markers etc.
Her heart consultant referred her to a renal consultant who was almost positive she had a severe form of vasculitis,he referred her to neurologist who agreed she needed an mri body scan with dye ,although she has scarring on her heart valves and kidneys,the couldn't say it was vasculitis.
She had swelling on the brain and spinal cord that finally went down with steroid infusions.
That is only really part of her story. She suffers from asthma,allergies/anaphalaxis,severe skin sores all over ,heart probs bowel probs vision problems/tunnel vision,severe pain and fatigue , sinus/ear infections,headaches , jaw pain,water retention,kidney infections,the list goes on ,bless her.
She is only 27 ,works fulltime,has twin 3 year olds and is finally getting fed up with things.
Like many,she has been told its, MS ,ME, vasculitis ,lupus, then discoid lupus and ms,now maybe still could be vasculitis,no one wants to commit themselves,now all the drugs she is on are causing het to have constant infections, she is thinking about stopping het immunesuppresants,what do. youcausg cons