Just wondering if anyone has mentioned this website to their doctor(s)?  If so, have they checked it out and what do they say about it?   Sorry to say that mine seem to refuse to even look.

I would love to get some input on this board from doctors from time to time.  

Thank you Jin-Il for all your valuable information on this board!  It is much appreciated.

Lisa

Why would your doctor refuse to look? That seems a little silly to me. I had never even thought of telling my moms doc about this site. I think it would be great for docs to visit and read everyones stories and all the info on here. It could be a great learning tool for them in a way. I will mention it to them if I get the chance. Good idea!                                Nikki

Of course Dr.S. knows aboout it.

::)when I was first diagnosed in Feb. my neurologist in Dallas told me NOT to get on the internet and read anything about this disease.  He said that it would depress me and it would do more harm than good.  Needless to say. . . that was the FIRST thing I did when I got home to Louisiana.  I first found out just some medical websites telling the facts and then I found DJ's website.  And I must say that this has been my saving grace!!!  My doctor still doesn't agree that I read updates on MM on the internet.  I don't know why.  I'm sure that he didn't appreciate that I got Dr. Steinbergs name and also requested my records to be sent to California for Dr. Steinberg to review, but after reading such success stories, I didn't have any other choice in my  mind.  I'm sure that my neurologist in Dallas knows that I got Dr. Steinberg's name off of this website, but the bottom line to me is that this is MY life and MY disease that I have to live with and deal with.   [smiley=huh.gif]

Amen Laura!!! I couldn't agree with you more!!!

Hi!

Before Louises surgery I kept digging for info on the internet but this fantastic site wasn´t "born" by then so what I found was very little and hard for me to value. The doctors did not want me to dig for information on the internet too much but I beleive that was because, as they said; there are too many "unserious sites" with no good info. And since my native language is not English it was hard for me to understand and value this info so it would just worry me they thought Makes sense? I think so. But again I always think the best of people and sometimes I have been called "too blue-eyed".
I have told Louises doctors about this site but since she is their only MM-patient I don´t think they´re all that interested really.  Who would they tell about it!? [smiley=huh.gif] Always my problem; "Louise is too few"  and the experts are all in Japan and USA. :-/

Well, it´s a beautiful Saturday and I´m gonna stop complaining right here and right now :)

Take care

Annica

In the mist of Tylers diagnosis I told our PCP about the site, however he frowned on the info I brought into his office. I then changed PCP's and told the new doctor about it, he seemed very eager to do research and was happy with the info I had.
Needless to say, although it was hard switching doctors in the middle of all that craziness, I am glad I did.

Timothy's neurosurgeon hits this site all the time.  He told me he thinks that it is geat that there is an internet support group for moyamoyaers.  I would say that a doctor who wouldn't want to look at this website, or want you to research anything on the internet is very shallow.  Dr. Iskandar told us to do as much research as we possibly could so that we could be prepared to ask questions that we had.  He gave everything that he told us on the first visit to his office in writing to help with our research.  That sounds like a doctor that has nothing to hide!!!!! ;)