Diagnosed with Myositis: Desperate for answers and help

Posted by vivd @vivd, Jan 1, 2021

Hello! I am completely new to discussion boards, so were just going to wing it. My 69 year old mother was diagnosed with myositis about 9 months ago after months of trying to figure out why she could barely walk anymore. After what seemed like tons of tests, here locally, with very few answers we finally saw some hope when she was diagnosed. After 4 infusions and a fall that resulted in a broken hip we are praying for some progress. She continues to struggle walking, standing, sitting and her overall strength is little if any. This disease has really affected her quality of life.

Is the mayo clinic somewhere we should take her? We are desperate for answers and help. We are open to suggestions and comments from anyone who has seen a loved ones life go from normal to completely changed within a couple of months. Thank you in advance!

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

ellens | @ellens | Jan 1, 2021

You can call Mayo and see about an appointment. You probably can just Google "Mayo Clinic appointments phone number."

Colleen Young, Connect Director | @colleenyoung | Jan 1, 2021

Hi @vivd and welcome. You posted perfectly. I'm tagging fellow members @pinkmk @johnnyv46 @buttons @fuzzybadger @kentyunker @jamesthee @wwill and @mklam who have shared their experiences with Myositis in the past and can offer support and guidance.

While we wait for others to respond, you may wish to review these older discussions:
- Inclusion Body Myositis: http://mayocl.in/2s0RGUu
- inclusion body myositis: http://mayocl.in/2taj7dx
- Does anyone have Dermatomyositis? I'm going for my muscle biopsy. https://connect.mayoclinic.org/discussion/does-anyone-have-dermatomyositis-im-going-for-my-muscle-biopsy/

If you'd like to seek an appointment at Mayo Clinic, here is the link on how: http://mayocl.in/1mtmR63
You may also find this info helpful on how to prepare for an appointment and questions to ask: https://www.mayoclinic.org/diseases-conditions/polymyositis/diagnosis-treatment/drc-20353212

Vivd: What kind of infusions did your mother have?

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