So few weeks ago I went to hospital because my neck was really weak and my eye was playing up to be told by my local hospital they where admitting me because I didn’t pass neuro my eye was rapd and my neck was weak They wanted me to stay in and see a neurologist about ms
So I discharged myself went back to my neurologist privet the ms specialist in charring cross
I’m going to attach his letter but basically he said I had neuro sarcoidosis and started me on high steroids 60mg to taper down 10mg a week and to see him again in clinic to start mex! This is the same doctor who I don’t really like and said there was no thing wrong with me in the first place well he said lupus and then negative tests he left me to it ! Laughed me out the door so I had to find myself another neuro
Which is who I have been seeing via the nhs he just wasn’t available to see quickly !
Anyway my neuro that I see the one who Said I had uctd and then dr Cruz said I didn’t
He was the one to start me on hydro and he upped it to 400mg
Which he said now caused my eye issues
Anyway he is London’s leading neuro sarcoidosis specialist
So I went back to him to tell him what the ms specialist said .. he stated to me that I do not have neuro sarcoidosis and mex I didn’t need
But had said he will do another brain scan pet scan a ect but I have to come off the steroids To be able to see it!
I just don’t know who to believe he is certain I have uctd and even when I said doctor Cruz said no he just said no dr Cruz is a busy man an I’m giving you the treatment he would give you. He discharged you back to my care I trust him with my patients and he trusts me with his !
Mex will ruin your liver !
At I time you may need it but for now you have uctd and we will call it Jade’s syndrome! My ace levels are still climbing at 93 I think they should be around 48 !
Steroids I feel better but not fantastic like I was hoping my headaches are back and Hydro has been cut to one a day !!
What would you guys do !?