Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

does anyone have a doctor ho has treated SS?

CarrieJones Message
26 Sep 2016, 01:30 PM

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...
tash Message
27 Sep 2016, 01:17 AM

Hi Carrie. Neuro seems to be the only treating doctor. What medication are you on?
Jojoart4 Message
30 Sep 2016, 07:19 PM

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
tash Message
1 Oct 2016, 01:10 AM

Hi, im the same with with other issues such as livedoreticularis, raynauds & 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.
tash Message
12 Jul 2017, 12:31 PM

Any updates on our Syndrome...

kennasym Message
13 Jul 2017, 02:25 PM

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.