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Katherine, Alumni Mentor
@katemn

Posts: 1501
Joined: Nov 21, 2011

Being your own advocate for your health

Posted by @katemn, Apr 18, 2016

@Paula_MAC2007 Paula, thank you for your “like” on my thoughts on a MAI/MAC Support Group. Truthfully I was a bit afraid to weigh in on the subject .. but I was fearful of a potential fall out of a “pity party” like I found when I went to my local Support Group. Our forum really tries to be supportive .. upbeat and positive .. to help each other on our journey .. that is why I keep coming back! Thank you for all your supportive notes to people .. you are just great!

Liked by janovr

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Katherine…thank you. I had wondered about that very issue! I am not afraid to speak up if it seems we are turning into a “whiner… Poor me group!” As on this site, I just want to know what others are doing as I tried twice to take the meds and ended up in the hospital both times. Too, I want a new doctor. Surely in the Atlanta area there is one who has great knowledge of this disease. Mine only knows …. Take the BIG 3, no instructions… PERIOD! Everyone keep sharing!
Thanks again!

Liked by lynnkolars

janovr, what I learned from all my husband’s health issues was to google ie Atlanta MAI/MAI doctors. If that turned up anything .. then I google the doctor .. find ALL info on their bios. THEN I looked at the schools they went to .. in my opinion .. if they could get into really good schools they were probably pretty bright. Then I looked at ALL their info .. research .. areas of interest .. internships .. what they specialized in etc. As an example .. my husband has CLL. So I would ONLY look at Oncologists who specialized in CLL .. blood diseases. You have to do you own due diligence.

Also you might contact Dr. Timothy Aksamit at Mayo Clinic, Rochester MN and request a MAI/MAC doctor referral in the Atlanta area. Don’t know if this will work. Mention that Katherine F. said he was a FANTASTIC doctor and might help you!! He gives conferences all over the world .. and certainly in the USA .. he might know someone in Atlanta. Good luck on our shared journey!!

Liked by janovr

@katemn

janovr, what I learned from all my husband’s health issues was to google ie Atlanta MAI/MAI doctors. If that turned up anything .. then I google the doctor .. find ALL info on their bios. THEN I looked at the schools they went to .. in my opinion .. if they could get into really good schools they were probably pretty bright. Then I looked at ALL their info .. research .. areas of interest .. internships .. what they specialized in etc. As an example .. my husband has CLL. So I would ONLY look at Oncologists who specialized in CLL .. blood diseases. You have to do you own due diligence.

Also you might contact Dr. Timothy Aksamit at Mayo Clinic, Rochester MN and request a MAI/MAC doctor referral in the Atlanta area. Don’t know if this will work. Mention that Katherine F. said he was a FANTASTIC doctor and might help you!! He gives conferences all over the world .. and certainly in the USA .. he might know someone in Atlanta. Good luck on our shared journey!!

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Thank you so much for the additional info.  I realize the need to do my own research, but I have really been on a health journey this past year that entailed so much more than MAC  and frankly have not had the energy to do anything…..I just put MAC out of  my mind and decided I had to concentrate on the other issues……my main one being so much weight loss I literally had no strength.  I am trying something now and will report soon if I feel it is successful and I am feeling hopeful. Thanks again!
Jan

Jan, in terms of the weight loss.. I might mention that as a direct result of the MAI/MAC .. I lost 18% of my body weight. Even since being stable since May 2014 I have not gained it all back. Frankly I have never been heavy in my life but am satisfied a my current weight. I was NOT satisfied at that 18% loss. I was pretty skinny and at 5’2+ .. I don’t think I looked that great. So I wonder if that could be part of your issue? Also I sure know fatigue was an issue for me with the MAC .. just hard to put one foot in front of the other. I know it is tough .. we have all been on this journey .. know we are here to support you.

Liked by janovr

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