Victoria Posted May 7, 2011 Report Share Posted May 7, 2011 Has anyone here been to the NIH? I saw my nephrologist yesterday and he also encouraged me to see Dr. Grubb. Yay! If seeing Dr. Grubb isn't conclusive, he's writing a letter to the NIH to see if they will accept me.Just wondering if anyone here has been to the NIH and if so, what did you think of your workup? Was it conclusive? Quote Link to comment Share on other sites More sharing options...
Ernie Posted May 7, 2011 Report Share Posted May 7, 2011 Hi,I went there twice in 2003 and it was my best experience as a research patient ever. Dr Goldstein is very competent, knowledgeable and kind.As far as I know there is no study for us right now. Quote Link to comment Share on other sites More sharing options...
Victoria Posted May 8, 2011 Author Report Share Posted May 8, 2011 As far as I know there is no study for us right now.Thanks Ernie, good to know you had good experiences. My doc wants to refer me to the NIH as a general patient with an unknown diagnosis, not necessarily for dysautonomia. Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted May 8, 2011 Report Share Posted May 8, 2011 Victoria - A woman I know up here just went to the NIH - she has mastocytosis (meets the WHO criteria). She says that doctors there don't yet recognize or treat the non-WHO criteria mast cell disorders like MCAD. Just FYI - Julie might know more about this. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted May 10, 2011 Report Share Posted May 10, 2011 Victoria,I have not had any experience with going to NIH (can I come along?), but from what I hear about Dr. Grubb, I think you may get your answers there. Would you shoot me an email or PM me and let me know who you see in Iowa? If I end up moving there, I'd like to know there's someone knowledgeable instead of driving to Rochester to Mayo Clinic all of the time. I'm guessing Iowa City?Cheers,Jana Quote Link to comment Share on other sites More sharing options...
kayjay Posted May 11, 2011 Report Share Posted May 11, 2011 I spent a week at NIH. I was not properly diagnosed before I went there. (sent there by Johns Hopkins). I would NEVER go again. The best way to describe it is that you are a lab rat. My chart was kept locked up ( so I couldn't read it) at all times. Also I have no idea how much radiation ect. I was exposed to. They are about scientific research NOT patient care.The nurses i had were very nice and even got me a cake for my 30th birthday. It is not like a normal hospital. They have an agenda to do research on subjects. I would only go there as a very last resort. Feel free to write me if you have any questions. I should have gone to Mayo sooner. NIH is one of those this I wish I could "take back". But I really liked and trusted my doctor... so I went. Nothing good came out of it... all bad! Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.