I have been looking all over the us for anyone who has treated sneedons syndrome. Do any of the members of this group have a recommendation? suggestion? I treat with neurologist @university of florida/Shands. and I would like more options. I am not good at the waiting game- I want to prevent dementia not wait around for it...

Hi Carrie. Neuro seems to be the only treating doctor. What medication are you on?

I was diagnosed by a dermatologist, and have a internal medicine doctor and a neurologist. I'm on warfarin, but that's the only medicine I take for sneddons. I do have other problems with my health that seem like a autoimmune disease so i have a rheumatologist also. No one seems to know much about Sneddon's. I hope you can find a good doctor! Jo

Hi, im the same with with other issues such as livedoreticularis, raynauds & pericarditis..im on Clopidogrel & asprin occasionally. Also BP medication. My condition is thought to relate to a rare non-inflammatory small vessel vasculopathty.. i have had numerous scans, biopsies etc. Im now under a cardiologist & lung specialist too. Have seen dermatologists & rheumatologist aswell. I hope you find some answers.

Any updates on our Syndrome...

Hello all, I highly recommend Dr. Robertson at USF-Tampa campus.  He is the head of the MS Department within the Neurology department there, he is fabulous!  His group is the one who finally made my diagnosis after about a year and a half post-stroke.  It does take a while to get an appointment (about 6 months) but he is definitely worth it!  The whole staff genuinely cares, and takes my research and input into consideration when deciding on care strategies. I bet they would be excited to have more Sneddon's patients as I seem to be quite the attraction for all the medical students there, they always come through to check me and my chart out since I might be the only Sneddon's patient they ever see in their career.  Dr. Robertson said he had one other one about 20 years ago at the beginning of his career.  He is very quick to fit me in if I call with a new symptom, this happened a few months ago and he got me right in and spent about 40 minutes with me himself. http://health.usf.edu/medicine/neurology/profiles/18333/Derrick-Robertson.aspx