(Archived fromdeborahwc - original forum)
deborahw

UPDATE: Due to numerous patient complaints regarding conflicting diagnoses by this doctor as well as very poor bedside manner, as forum owner, I can no longer recommend this doctor. Given the choice of doctors, I would recommend a different one at Mayo if you had to be seen there. The ultimate choice would be to go to Boston to see Dr. Akin or Dr. Castells.


Dr. Butterfield is another researcher. He is located at Mayo Clinic.


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Deborah
19 March 2009 07:28 AM

(Archived from jysmith - original forum)
jysmith
guru - member

Does anyone know anything about Dr. Catherine Weiland at Mayo Clinic?  She was suggested to me, along with Dr. Butterfield, as doctors who are closer to where I live than Boston is.  Need to see someone who's really knowledgeable to find out if things are getting worse or not.  It's causing me a lot of anxiety to not know what's really happening.

How often do most people have BMBs?  CT scans?  Has anyone had a bone survey done?  (I heard it's very high radiation, which doesn't make sense to me if the gene defect is caused by radiation.)  What tests do some of you all have and how often?  How often do you go to see your masto specialist?

I get so tired of going to see doctors, even if they're really nice.  It's just exhausting.  I stress before I go, and then I stress until I get the test results, and then stress about the results (LOL).  Then I calm down and deal with it, but it would be nice to really know what should be done and how often the best doctors recommend.

J.
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"I try to take one day at a time, but sometimes several days attack me at once."
28 January 2010 07:02 PM

(Archived from deborahw - original forum)
deborahw
This is great info, guys! I am going to create a separate post about her so that people can easily read what you have had to say.
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Deborah
30 January 2010 05:25 PM

(Archived from virginia - original forum)
virginia
I saw Dr. Weiler in Mayo.  She is the most amazing, knowledgeable , compassionate and patient woman.  We both cried and hugged each other so many times when I had to leave.  She then came to NJ.  I had a problem at the conference.  She just took one look at me and knew something wasn't right and helped me right then and there at the conference.  I love her!!  I will transfer to Dr. Castile as it is closer to me.  Unfortunately, I really do not have any Dr's that "get" this here in NJ.

Before I was at Mayo, I went to Mt. Sinai and they just didn't know how to help me but supposedly were "World Reknown" or known as the "Food Allergy Guru's of the World"....................NOT!!  Dr. Weiler wouldn't release me until I had a Dr to transfer to and Mt. Sinai, after leaving countless messages, never called me back."  Luckily she was meeting me in a few days back in NJ for the conference and was going to help me find one in the area.  Unfortunately for me, I do not care too much for the local one for reasons not going into here. But, I will travel again soon to Boston.  I need another BMB my mast cells have elevated drastically in the past 5 months.

Does anyone know if they do it on both sides in Boston??  Now normally Mayo doesn't keep patients on once they are done with their treatment.  Technically, you are supposed to transfer your care once you leave Mayo, but she knows that I can't find anyone good in my area and has agreed to stay in touch with me and help me when needed.

24 June 2010 10:43 PM

I was out to Mayo last week after suffering for 14 years with IA.  I met with Dr. Rank who was incredible.  His nurse was just as incredible.  I was scheduled to come back on Feb 7. I live in Michigan 10 hours away so he "fit" me in on the last day of my 4 day visit. He spent at about an hour with me going over my diagnosis and made sure I completely understood everything.  I am flaring again and am possibly allergic to one of the meds he recommended.  I called out there today at 2:00 p.m.  I had a return call with complete instructions by 4:00 p.m.  Yes, the same day!  Amazing!

Hello Riverwn,

I am new to the forum as of a few minutes ago and happened to click onto your posts.  I noticed that you were talking about Mayo.  I am also from the Gainesville area and am wondering if you went to their clinic in Ponte Vedra.