Lupus on brain mri facial palsy

[cathylou]

Any one have experience with lupus on brain, lupus showing on mri or facial palsy?

[zzcat]

Hello Cathylou,

I’m not exactly sure what you mean but in short, yes,

I had been diagnosed with vasculitis that was effecting my hearing and nerves in my face. Eventually it progressed to TIA’s and a stroke which was originally misdiagnosed as a facial palsy.

That then led to my now correct diagnosis of Wegeners, or GPA, after losing both my hearing and sight on one side. The same side as my stroke btw. Long story short, after many steroids, hearing is completely returned, and most of vision, am still on steroids and just beginning weekly infusions of Retuxan.

This is meant to push the vasculitis into chemical remission.

I hope this helps, not meant to frighten you, just don’t accept an easy diagnosis if you keep deteriorating.

Good luck to you!

[cathylou in reply to zzcat]

That's interesting as at my eye test in March I was told I had inflamed blood vessels at the back of my eye and they advised me to get BP checked. I went because of if really bad headaches. Facial palsy for second time in 18 months struck a month later along with the symptoms that led to my lupus diagnosis. Rheumatologist referred me for mri and neuro due to palsy because he doesn't know if it's related to lupus or a separate issue. How do they diagnose vasculitis?

[Buffy14]

Hi Cathy I think they would do blood tests to check for vasculitis if they suspected you have it , maybe your doctor's are checking , you did say they were doing lots of blood tests , if you are worried ask them about it , did the consultant you saw give you an appointment to see him again once he has all your results ? . If you have problems with your eyes you should mention it because hydroxycloroquine can cause problems with your eyes , did they explain to have your eyes checked regularly when on it x

[cathylou in reply to Buffy14]

Yes. He said I needed a baseline test before I started but I had an eye test in March and I'm not entitled to another one on nhs and due to losing my job I can't afford to pay for one just yet. He has done lots of tests, I took a photo of the blood form, do you know which blood test it is as I can check if it was on the list?

Thanks.

[Buffy14 in reply to cathylou]

No I'm afraid I don't but there is information on Google about it , there are different types of vasculitis though and so if I were you I would ask your gp if it has been checked for , do you have any rashes ? Sometimes people post a picture of their blood results on here asking if anyone knows what the results mean maybe you could do that x

[cathylou in reply to Buffy14]

I don't have the results, just the the ones he requested. I did Google it, he ordered esr and cry but there's one mentioned that wasn't ordered x