Inclusion body myositis

Posted by dexter651 @dexter651, Jun 4, 2017

Food to eat if you have ibm

Hi Becky,
Thank you for your ideas. If you don't mind, can you share what autoimmune disease you are dealing with?

REPLY

@kentyunker @monicasue and others — Here is the agenda for the Annual Myositis Patient Conference for 2019 in Minneapolis.

2019 Annual Patient Conference Agenda
https://www.myositis.org/myositis-library/annual-patient-conference/2019-annual-patient-conference-2/

REPLY
@kentyunker

Hi Becky,
Thank you for your ideas. If you don't mind, can you share what autoimmune disease you are dealing with?

Jump to this post

@kentyunker Thanks for your interest. I have a rare, and newly discovered, disease called CLIPPERS. It stands for chronic lymphocytic inflammation with pontine perivascular enhancement responsive to steroids. I was SO lucky to find a neurologist who had heard of the disease because none of the local doctors had. With high dose steroids my brain came back, but I needed a month of rehabilitation. I now get twice yearly infusions of rituximab, a monoclonal antibody . It’s been a long road….. As a retired nurse, I’m now trying to help others

REPLY
@becsbuddy

@kentyunker Thanks for your interest. I have a rare, and newly discovered, disease called CLIPPERS. It stands for chronic lymphocytic inflammation with pontine perivascular enhancement responsive to steroids. I was SO lucky to find a neurologist who had heard of the disease because none of the local doctors had. With high dose steroids my brain came back, but I needed a month of rehabilitation. I now get twice yearly infusions of rituximab, a monoclonal antibody . It’s been a long road….. As a retired nurse, I’m now trying to help others

Jump to this post

Wow! Not surprising that a former caregiver such as you would think of others while suffering! You are a special person! You are an encouragement! The world needs more of people like you!

My prayers and best wishes are given for you!

REPLY
@kentyunker

Hi John and Monicasue,
It has been a very long time since I have been on the blog. Monicasue. I experienced similar symptoms you shared with us. Steps, tripping, getting out of chairs, into and out of bed, weakness in my hands, etc. I thought it was my arthritis. My Rheumatologist diagnosed me in July of 2018 with Poly Myositis and started me on 80 MG of Prednisone weekly. Nothing changed. Then in December, Mayo re-diagnosed me with IBM Myositis. The reason for the re-diagnosis was that Mayo used different dyes to test the muscle biopsies. I was told that there is no treatment yet for IMB except exercise. I have been moving towards an all plant based diet (albeit difficult with family not being on board). I am convinced that diet and exercise will make a big difference in my quality of life. There is the "Annual Myositis Patient Conference" scheduled for September 5th – 8th in Minneapolis. Are you planning on attending? I hope to find more information on issues such as the best diet, exercises and mobility support devices, progress on treatments, studies, etc. It will be my first conference. Also, the Myositis Association itself is a big source of information. Many states have local chapters that you can join. I highly recommend it if you have not already.

Jump to this post

I would love to get an update of the Minneapolis conference. My husband is quite advanced at this point hving a lot of difficulty mounting stairs, rising from a seat and sometimes even getting out of bed. He has given up exercising and is very fearful of falling. Fortunately he is able to do some part time work from home and when he has to travel for work someone from the firm travels with him. I really believe that if you keep exercising you can hopefully maintain some muscle strentgh.
Merle

REPLY

Hi mklam,
I can really empathize with your husband. Stairs are a menace to me, getting up out of low chairs, and having my legs buckle whenever they feel like it. I also agree 100% on your comments about exercising. It is difficult to keep doing something you don't want to really do that does not immediately produce results. Yet carry on we must! I also believe that the food we put into our bodies will also define our quality of life. I am in a deep dive study of that now.

Regarding the TMA Minneapolis conference, you can contact The Myositis Association online at TMA@myositis.org. It should give you the whole story. If you need more, the telephone number is 800-821-7356. If that doesn't work, jump back on this blog and someone of us will help you in any way we can.

Good luck and GOD BLESS BOTH OF YOU!

REPLY
Please login or register to post a reply.