Cnsv and susacs syndrome

[Debbie_50]

Hi I was diagnosed with cnsv a year ago next week but neurologist changed it to susac syndrome I live in South Tyneside is there any stroke clubs or something similar for younger people if anyone knows I’d really appreciate it

[vivdunstan Volunteer]

Yes there are clubs.

Look at stroke.org.uk/finding-suppo...

and search by your postcode. There look to be a lot in the Newcastle etc. area.

Good luck!

[Debbie_50 in reply to vivdunstan]

Thanks viv i’l Start looking x

[Suzym2u Moderator Vasculitis UK]

I know one other young person with Susac Syndrome. How old are you if you don’t mind me asking. Susan

[Debbie_50 in reply to Suzym2u]

Hi I’m 50 now

[nic_skevo]

Hello, I've only just seen your post but I've been searching to find others that also have Susac's as I was diagnosed with Susac's a couple of years ago now.

What symptoms have you had?

Hope to speak soon

Thanks

Nicola

[Debbie_50]

Hi Nicola I had a stroke through it , it affects my eyes they were both very blood shot and I had a bad stammer and speech issues but since dropping to 10 mgs of prednisone that seems much better ,what symptoms have you

Had ah and bowel problems usually take senna and docusate and suppsitries help xx Debbie

[nic_skev in reply to Debbie_50]

I started with vertigo and migranes and then lost the hearing in both ears followed by the loss of some peripheral vision in both eyes. It has also affected my bowel and bladder as well. Oh and I also have cataracts from being on the steroids for so long! But I'm down to just 2mg a day now and also take immunosuppresants as well.

Nic xx