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Posts (11)

Thu, Aug 1 1:58pm · Inclusion body myositis in Autoimmune Diseases

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!

Tue, Jul 30 9:10pm · Inclusion body myositis in Autoimmune Diseases

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!

Tue, Jul 30 6:46pm · Inclusion body myositis in Autoimmune Diseases

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

Tue, Jul 30 6:41pm · Inclusion body myositis in Autoimmune Diseases

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.

Fri, Feb 22 2:35pm · Inclusion body myositis in Autoimmune Diseases

I have recently been diagnosed with sIBM and would love to talk about any effective activities/choices to mitigate the problems living with this untreatable Autoimmune disease. Certainly there is the push for non-stop workouts to build muscle. Are there diets, supplements, vitamins, specific "dos and don'ts", weather, etc. that make any difference? It would be great to share experiences.

Mon, Feb 18 5:20am · Cleaning your CPAP mask. in Sleep Health

Depending on the make/model, you should be able to remove it.
Sweet dreams!

Tue, Jan 29 9:55pm · Leaking Mask in Sleep Health

No problem. Done that many times myself. Let us know if they (Docs) help you out.

Tue, Jan 29 6:16am · Leaking Mask in Sleep Health

Your message is somewhat confusing. Did you mean the "hose" is leaking air? What is "red grown"?

It really seem like the issue causing the leaking and redness are related to your mask fitting incorrectly. The problems should be very easy to solve with a visit to your doctor or the place where you received your mask. How long have you been using a CPAP machine?

Don't give up! "Sweet Dreams" can be yours!