hawaiigirl789 Posted October 27, 2004 Report Share Posted October 27, 2004 HELP!!! I have had POTS/NCS for 4 years now, and unfortunately each year it has gotten worse. The first 2 years was spent on doctors that would say it was "all in my head". Now, although I do have a diagnosis, I cannot find a doctor that knows about dysautonomia and will treat me! Dr. Grubb has even sent my physician a plan to follow concerning medications if I feel worse, but she won't follow it because she doesn't feel comfortable. I am going to see a doctor in Redmond on thursday that treats someone with dysautonomia, but if anyone knows of other doctors I would love to know! Also I know Ehler's Danlos is connected with POTS patients, and if anyone with EDS has any ideas to help with pain that would be great!Ashli, OR Quote Link to comment Share on other sites More sharing options...
briarrose Posted October 27, 2004 Report Share Posted October 27, 2004 You will find it difficult to find any doctors in this area anywhere on the West Coast. I fly to Ohio to see Dr. Grubb.I have a primary that follows Dr. Grubb's recommendations (thank God!) I also have a cardiologist here in Portland that diagnosed me and knows a little bit about POTS and Dysautonomia, I know I'm not his only patient. But if you want someone that has a lot of experience with this illness I think you'll need to travel back to the Midwest or East coast.Feel free to email me if you need more.Steph Quote Link to comment Share on other sites More sharing options...
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