CNSV and rash

I posted a week or so ago. I was diagnosed with PACNS in 2005 and was treated and have had no relapses until now. I have been having symptoms for ten weeks (seizure , headaches, neck pain, nausea, vomiting, numbness on face and arms and legs and private parts). The vasculitis work up in hospital was looking negative. I had a really bad day yesterday starting with headache, nausea, extreme dizziness, full body sweats and It was very scary trying to walk to bathroom. It passed after 5 hours or so and then I developed suddenly two lines about 10 cm of red now purple (not raised) of broken blood vessels on right thigh and hives on both forearms. I had never had this nor some of the other symptoms this time (the numbness, nose bleeds, clogged tear duct). My appointment with new rheum is on Wednesday. Is it Ok to just wait for Wednesday or should I consider having it checked

Out sooner. My right eye feels weird. Have been to ER 4 times already and don t want to go unless I should . Does this rash mean systemic? Thank you all for you responses to my first post. I feel so grateful for the support, knowledge and experience of those on this site!!!

4 Replies

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  • I suspect - but don't really want you to rely on me! - that unless you get much worse you should be ok to wait until Wednesday. The big advantage of waiting is you will see a consultant who knows your disease, and knows what they are looking at. If you try to see someone else sooner, for example a family doctor or an A&E doctor, they won't know so much about vasculitis.

    It is possible that your rash will go away before Wednesday, so I would recommend if possible that you photograph it as it is now. So if it has gone away you would be able to show the hospital doctor what it was like, which might help them judge it.

    As far as I know - fellow cerebral/CNS vasculitis patient - rashes are unusual with vasculitis in the brain. It may be that you have a more systemic case, but you really need a rheumatologist or other vasculitis doctor to look at it.

    Good luck!

  • Thanks Viv. I did photograph the Petechiae and it is fading so your advice was very helpful. When I started to research it, I did find a few people who had CNSV who did get this on and off all the time. I also realized that I have livdo reticular. I didn't know what it was but I had taken a picture of myself when I got out of a steam bath 6 weeks ago covered in the red and white patches from head to toe.

    I also saw a post from a woman who always felt the need to blow the pressure from her head by holding her nose and blowing the air out of her ears just like pressure in an airplane. I started doing that before my original onset and the medical notes in emergency just before I was transported to another hospital's intense care unit (they thought I was having an aneurysm) document me doing this frequently. Whenever I have told a doctor that doing this helps to relieve the pressure, they give me that look as though I have two heads. Does any one else do this? Thank you for your response. It did help to calm me and I am now just a day and a half away.

  • if I was u ring the hospital and ask to speak to your drs seceraty and your dr will get in touch

  • Thank you Cedric! Thankfully my appointment is just around the corner!

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