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Thought I'd reach out

seanfwales Message
17 Feb 2014, 02:37 AM

Would anyone like to chat about PACNS? Was diagnosed with it in Dec. 2013- Currently doing treatment. Sean from Boston
TiffanyShaw1977 Message
18 Feb 2014, 06:10 AM

Hi my name is Tiffany Shaw I was diagnosed with pcnsv in 2012. I live in Texas. Where are you at in your journey? Treatment plan....
seanfwales Message
18 Feb 2014, 03:17 PM

Hi Tiffany, Thank you for your reply. I was starting to think I was alone on this one. Sorry we couldn't be chatting about something a little more pleasant. I live in Boston, MA. Its been quite a journey the past few months. I didn't think a headache would lead to this. I ended up having 2 strokes in Nov. then was diagnosed. I did a month of rituximab and am currently taking steroids. I have recovered from the strokes to I'd say 90% which is great. I did go get scans done 2 weeks ago and unfortunately there has been no improvement to the effected vessels, but I'm feeling ok and go about normal life. So my doctors and I are doing a wait and see kind of thing. Keeping a positive attitude! How about your story? and thankyou again take care, Sean
seanfwales Message
22 Feb 2014, 06:28 PM

Hi Tiffany, I am interested in hearing how things are going for you, if you don't mind. Any info would be great I hope you are well. Sean