Does anyone know of any good speciali... - Hughes Syndrome A...
Does anyone know of any good specialists in APS in Kansas? My family dr tries to understand and does listen. But lately having more issues
Hi we have many members in the USA who will be able to give you more localized knowledge, failing that contacting one of the names on here, may give you access to somebody nearer: apsaction.org/ Best of luck. MaryF
Thank you Mary. I wish they had email addresses available. I hate calling someone I don't know and sounding like an idiot :/. There are several listed for USA but nothing nearby. I may try calling some next week after Monday as a lot of folks treat it as a holiday, being the day after Easter
Dr Kathy Hassell at University of Colorado is excellent
Thank you :). Prob is that's over 500 miles away. I am looking for someone a little closer if possible for 'routine' care. I can travel a couple if hundred miles for that. But 15 hours of travel there and back is a little far :/. Would be ok for a specialty appt
healthgrades.com/provider-s...
This is for my area but you can plug in your zip code and find a Dr. in Kansas 
Hi! I live in Illinois and have found it very difficult to find ANY doctors with a great knowledge of APS. They understand the clotting side of it, but not the other crazy symptoms that we suffer from. I have a team of doctors now...from Hematology, Vascular, Cardiologists, and GP. Together they all work through things, but it sure would be nice to have someone who understood this disorder. I have traveled to Chicago, you name it....NADA. Again, they understand the blood side of it, but that is it. I highly recommend you calling and talking to a nurse or someone at their office before traveling to see a new doctor. Ask how much experience they have with APS, ALL sides of APS. If you don't, you could be wasting time and money. In my four short years of dealing with APS, research and determination have been my best friends. Don't give up till you get the answers you are seeking.
I can only hope that some day down the road, there will be a greater understanding of this disorder.
Good Luck and God Bless
-APS friend in Illinois
I have found the same issues. I have to admit in the beginning (9years ago) I thought that if I was on thinners it would be THE miracle cure and it would sort out all this other things too. Until it got to the point that even though I had what the Drs said was a therapeutic INR and I was still having issues. Headaches. Dizziness. Numbness. Balance problems. Memory issues. Tremors and just general yuck. Come to realise there is more to this than they said. Did my own research and found it wasn't me after all. It was this damn APS. My GP tries. He listens to me. But not sure if he hears what I am saying sometimes
Bexter0021. That search tool brought up a ton of Drs that list APS as a condition they treat. I think it's time to do some calling around! Thank you so much!!!!
mayoclinic.org/departments-...
"Mayo Clinic rheumatologists support community doctors in Albert Lea and Owatonna, Minn., and Decorah, Iowa, in their care of patients with rheumatic problems through personal visits and technological connections. When necessary, doctors can refer their patients to Mayo Clinic for care unavailable locally"
Mayo Clinic Rheumatology Department : Gonda VAscular Center is part of the Vasculitis CLinical Research COnsortium
best of luck
