Vasculitis UK
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Possible CNS involvement with ANCA Vasc

Since my last post, I received a call from my consultant on Monday evening. He asked me to come in the next day to discuss the results of my MRI. He explained that I had a blood vessel which has narrowed in my brain but that this vessel is not 'active' and other vessels are supply blood to that area. He then asked me to come in today for a lumbar puncture to confirm CNS involvement and exclude other possibilities. The procedure itself was relatively comfortable and went smoothly. However, upon the doctor completing the LP, I suddenly burst into a crying fit. What was I upset about? I don't even know at this point! Thankfully, the nurses on the ward were very supportive and helped to calm down. The results should be available in a couple of days. My consultant also prescribed me Aspirin to thin my blood. I'll be seeing him next week Thursday to start my first Rituximab infusion and then have the second infusion two weeks later. In the mean time, I continue on 40mg Prednisolone and 1g MMF a day. On the bright side, I'll be going home from uni tomorrow for Christmas.

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Of course you had a good reason to be in tears - you had just had an invasive procedure which isn't pleasant even if it did go very smoothly and it is the first step into a journey into the unknown. I think even I would have been in tears and I worked in the NHS for a long time.

Virtual hugs - and have a lovely break at home xxxxxxxxxxxxxxxx

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Hi PMRpro! Thank you for the support. *virtual hugs* in return. Merry Christmas :) xxxxxxxxx

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Hi,

I certainly know of other patients who have an " isolated " narrowing of one blood vessel in the brain which hasn't progressed over time.

I am pleased to hear that they are going to give you Rituximab as it's a very effective treatment for ANCA associated Vasculitis.

Have they ruled out anti phospholipid syndrome as well as it's a fairly common secondary and can cause Central Nervous System involvement.

I hope you have a lovely Christmas and that 2018 brings remission and better health.

Best wishes

Lynn

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Hi Lynn, thanks for the reply. I suppose they will assess the lumbar puncture findings and go from there. Wishing you a very Merry Christmas and happy 2018! :)

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Just felt I should say a prayer for you for physical healing and emotional peace. We all understand the stress you are under—and I’m so sorry. Sending a Christmas hug from the US.

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This means a lot. Thank you and God bless.🙏

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