Looks like he has had a positive result. The hardest thing for me was getting a doctors appointment and referral to see a neurologist. I have been living with Myositis since the spring of 2020 and now waiting to get a special blood test and muscle biopsy. Very encouraging listening to his testimonial. Thanks
2
Bernadette Garvin on
January 2, 2022
Michael , thank you for sharing your story, for explaining your symptoms and treatment options . I was recently given this diagnosis about three weeks ago ! But like you I had symptoms for some time , especially difficulty in swallowing . It was uplifting and enlightening to hear your progress and I am going to find out more info re treatment immunoglobulin . I meeting my consultant 11/01/22 that January as I live in Ireland . So , I do have a medical background , previously worked in research and now I feel I can ask questions re treatment options . Really appreciate you sharing your story , because I can identify in so many ways . Again thank you .
3
Bhavna on
January 18, 2022
Hi Michael , just watched your inspiring journey on myositis..My husband is facing this condition since last year and is struggling .I want to know what diet did you follow ? My hubby has dysphagia, has mostly liquids , so I wonder how will be build his body back ? We are based in Dubai and didn’t find any such support groups.. Would love to hear from you .Thanks in advance .
4
Charles h gordon sr on
April 28, 2022
Inspiring and uplifting to hear about success. God continue bring you success
5
Dimitri on
May 3, 2022
This video was very helpful my Grandson has been diagnosed with myositis thanks for sharing 🙏🏾💕
6
Ridhima S on
May 4, 2022
Thank you for sharing your experience, my dad is diagnosed with IBM and I am considering getting him IVIg. I live in Northern California, whom can I consult for this
7
Kari on
September 10, 2022
Fascinating description of feeling “tight” and “pain” and later after the IVIG, “loosening up”.
I think that’s the CLASSIC description for myositis patients who start out fairly fit. That vague feeling of legs still not being fully back but still having much return of strength, also classic. The weight loss too. Finally the long slow way back is something that also can have ups and downs. The challenges of taking small advances in the exercise routine without resulting in problems of stiffness, needing to stretch alot, and/or disability can be difficult.
8
Cherry Haughton on
October 7, 2022
Your story is remarkable. I I always look for hope and think, maybe this is the day I will start to respond to new treatment. Did you have severe muscle pain? This condition started about two months ago. What blood labs are specific for the diagnosis? Thank you, cherry
9
Mary on
April 12, 2023
Hi Mike,
My name is Mary. Thank you so much for the video. I appreciate your courage and strength.
I too have been athletic with tennis much of my life and active with my dogs, walking, etc.. I am in the diagnostic process and have had high Aldolase, CK, and HMGCR antibody along with a diagnosis of mild myositis after MRI of thighs. My strength has improved since stopped statin, but lab continues to be high. My doctor is leaning towards diagnosis of Statin Induced Necrotizing Myositis.
She is also in process of getting PA with insurance to get IVIG treatment. I am hopeful, too. Did you ever have any back and SI joint/hip pain ?
Thanks again,
Mary
Looks like he has had a positive result. The hardest thing for me was getting a doctors appointment and referral to see a neurologist. I have been living with Myositis since the spring of 2020 and now waiting to get a special blood test and muscle biopsy. Very encouraging listening to his testimonial. Thanks
Michael , thank you for sharing your story, for explaining your symptoms and treatment options . I was recently given this diagnosis about three weeks ago ! But like you I had symptoms for some time , especially difficulty in swallowing . It was uplifting and enlightening to hear your progress and I am going to find out more info re treatment immunoglobulin . I meeting my consultant 11/01/22 that January as I live in Ireland . So , I do have a medical background , previously worked in research and now I feel I can ask questions re treatment options . Really appreciate you sharing your story , because I can identify in so many ways . Again thank you .
Hi Michael , just watched your inspiring journey on myositis..My husband is facing this condition since last year and is struggling .I want to know what diet did you follow ? My hubby has dysphagia, has mostly liquids , so I wonder how will be build his body back ? We are based in Dubai and didn’t find any such support groups.. Would love to hear from you .Thanks in advance .
Inspiring and uplifting to hear about success. God continue bring you success
This video was very helpful my Grandson has been diagnosed with myositis thanks for sharing 🙏🏾💕
Thank you for sharing your experience, my dad is diagnosed with IBM and I am considering getting him IVIg. I live in Northern California, whom can I consult for this
Fascinating description of feeling “tight” and “pain” and later after the IVIG, “loosening up”.
I think that’s the CLASSIC description for myositis patients who start out fairly fit. That vague feeling of legs still not being fully back but still having much return of strength, also classic. The weight loss too. Finally the long slow way back is something that also can have ups and downs. The challenges of taking small advances in the exercise routine without resulting in problems of stiffness, needing to stretch alot, and/or disability can be difficult.
Your story is remarkable. I I always look for hope and think, maybe this is the day I will start to respond to new treatment. Did you have severe muscle pain? This condition started about two months ago. What blood labs are specific for the diagnosis? Thank you, cherry
Hi Mike,
My name is Mary. Thank you so much for the video. I appreciate your courage and strength.
I too have been athletic with tennis much of my life and active with my dogs, walking, etc.. I am in the diagnostic process and have had high Aldolase, CK, and HMGCR antibody along with a diagnosis of mild myositis after MRI of thighs. My strength has improved since stopped statin, but lab continues to be high. My doctor is leaning towards diagnosis of Statin Induced Necrotizing Myositis.
She is also in process of getting PA with insurance to get IVIG treatment. I am hopeful, too. Did you ever have any back and SI joint/hip pain ?
Thanks again,
Mary