That is so wonderful, SheSurvives! It is so encouraging to hear these success stories. And we are getting more of them on this community. :)
Hi All,
My Mom found out in March that she has localized Attr Amyloid in her blood vessels. Her symptoms are all over the board. Her docs say there is nothing they can do for her at this time. Shes on various medicines but the symptoms especially her bp is up and down and no two weeks look alike. Sometimes she is great…others so tired she cant stay awake and has dizzy spells and slurred speech. I don-t know what to do for her.
Firecracker, if you post a new discussion by clicking the discussion tab above, I can share it with the members, and we can see what advice they have for you. We also have a caregiver support community that might be helpful to you at this time. There is a link to it on the Communities List on the right column.
Hi Firecracker,
It sounds like your mothers doctors have NO idea what they are doing. I would suggest that you get her to Karmanos in Detroit IMMEDIATELY, to see Dr. Jeffrey Zonder. There are several clinical trials that are ongoing for ATTR amyloidosis and some of them are offered at Karmanos - http://amyloidosissupport.org/support_groups/ohio.html. Do you know how her doctors came up with the diagnosis and does she have the inherited ATTR or the old age onset type of ATTR? The Mayo Clinic or the University of Indiana (Dr. Merrill Benson) are also very good options. I am the facilitator of the Michigan support group meetings that are held twice each year in Detroit. Our next meeting is on September 19th and you can read more at http://amyloidosissupport.org/support_groups/ohio.html. You should also watch the video and read the booklet located here: http://amyloidosissupport.org/amyloid_aware.html.
I would be more than happy to provide you with the contact information to any of the above hospitals. Email me privately at ■■■■■■■■■■■■■■■■■■■■■ and I will give you the email addresses and/or phone numbers so you can contact them directly. There are not any hospitals in western Michigan that can treat her correctly!! I would be more than happy to speak to you on the phone if you want to. Email me and I will send you my number. You can also call the toll free number for the Amyloidosis Support Groups at 866-■■■■■■■■ and speak with Muriel Finkel. You need to be an advocate for your mother and get her the help that she needs. We are here to help you do that....just tell us what you need.
Paula Schmitt
Localized Amyloidosis