Cerebral vasculitis - urgent MRI requested - confused

Hi everyone

I am hoping someone might be able to help as I am confused about this - which is not hard even on a good day lol. I went to see my rheumy doc this week and she has requested an urgent MRI for possible cerebral vasculitis?

My ANA Screen has jumped high and I have no signs of the lupus affecting my kidneys, but she is worried about my head. I am having a lot of problems with lupus fog - I forget everything, having a lot of dizzy spells, I get frequent migraines, forget what I am saying mid sentence (which is really embarrassing), I am confused a lot. I can't have a decent chat with anyone coz i can't concentrate on what people are saying - people must think I'm ignorant. I feel like I get a popping sensation in my head that does hurt at times.

I keep getting a weird feeling like I am going to pass out, which is scary. It feels like the room is floating and I sometimes get double vision. I feel like I have a lot of pressure behind my right eye. I also have started twitching when I am really tired - I didn't even notice it at first - my mum and daughter told me that I do it. I have mood swings (low mood a lot) and like all lupus suffers I am completely shattered all the time.

Does this sound familiar to anyone??? I just thought that all this was because I am tired, but the doc is worried about my high ANA. I don't know what to think ?

Sorry to moan but I don't really understand this cerebral part of it all. I hope this all makes sense. If anyone could help I would be grateful

Lupie hugs and love to u all

Esky xxx

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13 Replies

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  • Hi esky, it is vessel inflammation and vessel wall of the brain. I'm not a doc, I just happened to be reading up on vasculitus. Please remember that lots of tests are to RULE OUT, these things. Some of us do have vasculitus with lupus. Put that with sjogrens, and you may be just need your meds adjusted. Panic when you hav something to panic about. It's easy for me to say I know. Stress will make you worse. Steroids and cyclophosphamide are the treatment. Really hope all is ok for you. Let us know how you get on.

  • Hi 6161 thank u for your reply. i have decided not to stress its just another turn on the lupus rollacoaster lol. thanks hun. lupie hugs esky xx

  • Hi esky

    Sounds very familure I have all those symptoms plus some more in my case it would appear to be the nervous system involved had mri and ctrl scans yes it is annoying when you forget words names and arrive home with have the the shopping

    You just got to stick at it I'm lucky with the support I get from my wife and extended family

    All the best George

  • Hi george thank u for your reply. It can be really confusing. I just have to wait for MRI anf go from there. thank u for ur help it make me feel better knowing that im not the only one. lupie hugs esky xx

  • Hi esky, I am exactly the same as you, except for the dizziness! I have the twitching and memory loss! I say wrong word all a time and can never remember details about a conversation I have had. Its so frustrating! My family and I laugh about it all a time! Its just me!! They say! But I do worry that it is getting worse! Can you please let me know what happens with you! Wishing you well! Forgetful x

  • Hi forgetful. thanks for your reply. i know its awful - i feel stupid at times coz of it. i will let u know how i get on. lupie hugs esky xx

  • Hi Esky

    I have similar problems, my consultant sent me for and MRI but could not draw any conclusions from it although there were swellings. I am now awaiting the results of the CT scan I had recently.

    All the best Jax.

  • Thanks for your reply Jax. Hoping everything works out with the CT hun. It's strange that a lot of us have the same problems - lupus really does suck lol. Thanks Hun. Lupie hugs esky xx

  • Hi esky, I too have been diagnosed with cerebral vasculitis, but I had a special scan called a SPECT. Scan which shows up the blood vessels and the blood flow. Mri scan was clear. Hope that helps, Elfie.x

  • Thanks for your reply Elfie

    never heard of a SPECT lol. MRI today so fingers crossed. thanks for your help. lupie hugs esky xx

  • Hi all

    Just wanted to update u all. Good news MRI was clear no problems - thank god. The consultant wants me to talk to my gp about my memory problems and confusion - good luck there lol. Thank u all for your support. Lupie hugs xxx

  • Hi, I also went for an emergency MRI Last month as I had the same symptoms and they where getting worse. I was diagnosed with Cerebral Vasculitis and immediately put on 60mg of prednisolone for 15 days which are to be to reduced by 10mg after every 15 days. I am now getting better but the confusion and virtigo is still a problem. The memory is getting some what better as well as the headache. I thank my Rheumy for sending me for the MRI as it had been months of being in pain, bran fog, not able to put words together, forgetting things and disorientation and to top it all my GP kept saying "It is Lupus flareup no need to worry just take your medication"! I hope this wont be the case with you. Whatever the outcome, embrace it you will get the treatment you need. Take care xx

  • Hi pipido

    I hope u feel better soon hun. Lupus throws too many things at us, but we all keep fighting. My thoughts are with u.

    Lupie hugs

    Esky xx

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