I have wbc count and have had recent blindness in one eye with disturbances in seeing.My neurologist has told me looking at all my symptoms that he thinks I may have this.The only way that confirm this is by having a Lumbar Punture done.Any knowledge on this desease or lumbar punture would be appreciated.I have had numerous tests including amr and mri scans along with xrays I am also waiting to see ENT consultant as my hemotologist explained I could have allergie.Not sure what to think.Apart from the fact it's really starting to effect me,anxiety and feeling down.😢

6 Replies

  • Hi

    When you say disturbances, would you describe it as starting as a pinpoint of light - expanding to cover your vision in like a kaleidoscope effect? Lasting mayb 20-30 minutes?


  • Hi Paul

    Not like a kieldescope and no lights.Just only having vision in one eye and items in room my tv looked like someone had moved it in front of me.Very scary.Paremedics were called and BP was high.which did not add up as I am on mess for BP. Admitted to hospital were all the tests began 😡thanking you for all your reply I'm new to this.

  • Hi, no problem, does sound like a different problem, hope you get sorted soon.


  • Hi Jan, sorry to hear your problems at present.  I have had vasculitis but it was in my leg.  I was laying on my bed reading when my hubby walked in and said "What the heck have you done to your legs???".  I hadn't done or felt anything but it looked like someone had got a red felt pen and drawn over all the veins in my leg.  As I had already suffered with 3 DVT's we went to A & E where a variety of blood tests were taken and I was diagnosed with vas.  My veins had leaked, plain and simple.  My ANI levels were elevated so they suspected lupus.  It took weeks to recover and the slightest knock to my legs resulted in ulcers.  I still have the scars on the ankles.  I cannot imagine it in the eye, it makes me shudder to think of it.  Have had further minor outbreaks but nothing compared to the first.  Hope you get some relief and quickly.  Keep in touch and let us know how you get on.



  • Hello Jan, sorry to hear that you are having these problems, it can't be very nice for you at all, I am not surprised to hear that you are feeling anxious and that it is getting you down, it can be very stressful when you have lots of tests waiting to get the results, I hope you get some answers very soon and that the doctors get you sorted out.  If you feel you would like to have a buddy to talk to then please email me at and I can send you the details.  Let us know how you get on.  Best wishes, Maz 

  • Hi I have put in for help to talk to someone.As I do not want to put my worries and concerns on family,I do have a friend who knows a little of what's been going on.thank you for your reply maz.

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