Just being diagnosed with necrotizing myositis your story is very encouraging. It gives me hope that I will be back running and playing with my three kids soon. Being 35 and having limited mobility with three children has been heartbreaking. Thank you for posting your story.
2
Deidre M Champion on
June 24, 2021
Thank you so much for sharing. You are the first person that I have seen with NAM tell their story. I will say that it gives me hope. I was diagnosed back in late May. I have only been on medication for 3 weeks now. But I will for sure ask about IVFG treatment.
3
Ricardo Nodhal on
July 21, 2021
Hello Michael,
My name is Rico and I have Statin Induced NM. I don’t know how long I’ve had it but my pain started in March of this year. My question to you is when you started exercising did it make your CK numbers go up. Physical therapy has been feeling like I’m making progress but my wife thinks it makes my numbers go up `thus making it worse. Therapy is the only thing that I feel has given me hope because we’re still trying to get the right combination of medicines. I’m at 8000, 3- weeks ago I was at 5800, Did your numbers fluctuate with your exercise?
4
Inez Petersen on
August 15, 2021
Can you clarify the name of the doctor again? Mammon? I could hear it clearly.
5
Michael Minella on
August 22, 2021
Hi Mike,
I enjoyed your video very much. In mid June of this year I started have leg and thigh issues. It felt that my muscles were getting weaker and i started having difficulty walking. It though it was because I was over working as a property manager. The symptoms got worse. I went to my primary Dr. , he did some test and found my CK level was at 897. I had been taking statins for years so he told me to stop taking them and to see if in a few weeks the weakness went away. It didn’t. I figured it was time to see a rheumatologist . He ran all the anti body tests on me and they all came out negative. However my CK level had risen to 1297 and my Aldolase, another marker for muscle inflamation level was high at 10.8. He suggested I get an EMG from a neurologist. I did ,the test revealed that my muscles were firing normally and working properly. My rheumatologist scheduled an MRI of my thighs ,to see if it shows signs of Myositis. I am getting that MRI this week. If the MRI shows Myositis he want to start me on a prednisone regime . Any advise will really help me.
6
David leithed on
October 22, 2021
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
7
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 .
8
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 .
9
Charles h gordon sr on
April 28, 2022
Inspiring and uplifting to hear about success. God continue bring you success
10
Dimitri on
May 3, 2022
This video was very helpful my Grandson has been diagnosed with myositis thanks for sharing 🙏🏾💕
11
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
12
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.
13
Angela Elliott on
May 31, 2023
Is that what your first symptoms were of tightness and stiffness? I have had dermatomyositis without the muscle issues for over a year now and about 4 months ago, I started getting stiff and my range of motion got much more restrictive. My hamstrings are so unusually tight and I can’t reach parts of my back I used to be able to. My hips are extremely tight and it is slowly getting harder to climb the stairs. I painted a room last weekend and I had to keep stopping about every 10 to 15 minutes, which is not like me. I see the rheumatologist about this tomorrow. Very nervous.
14
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
15
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
16
Michael Kerin on
June 24, 2023
Hi Everyone,
Well my life of Myositis recovery continues. It is two years since I made this video and thankfully I am still very strong. My CK levels do vary from 300 to 2000 but I feel like I am 90% of what I was before myositis took over and I only see it staying this way.
If your symptoms are similar to mine, you have great hope. I credit my diet, my exercise routine, my treatment, my kids and my beautiful bride for getting me to this point. I do think about this disease every day but I don’t let it slow me down.
Bhavna, the IVIG treatments took care of the dysphagia. I don’t seem to have it anymore.
Cherry, the CK levels seem to correspond to the level of muscle weakness. I tend to think they are different for everyone. I did mention in the video that my CK was well over 10k when I broke down. I have seen them go back down to 200 and then back up as high as 6k again without noticing anything. Lately they have been around 1k but I am still strong.
Mary, my lower back aches a bit but I don’t think it is related to myositis. My muscle pain was where my torso meets my limbs and also my calves. Dysphagia persisted at the time but that was never painful, more like uncomfortable.
17
Saba Ahmad on
June 26, 2023
Hey , your story has really motivating. I have been diagnosed with Myosotis recently in June 2023. From last 1 year have been struggling but the diagnosis was taking time. My doc are planning for IVIG and I am really looking forward to this treatment. I am sure I will gain my strength back. Please pray for me.
18
Michael on
January 25, 2024
Hi Michael.
I have the same antibody and symptoms as you and I am about to start IVIG.
You mention your diet helped in your recovery – what changes did you make to it?
19
Michael Kerin on
March 18, 2024
Hi Michael.
You can say that I am following the Mediterranean diet. My wife has been giving us both leaner options and I have come to like it very much. She always says everything in moderation so I still do enjoy pizza and beer on the weekends 😉
I hope the treatments work out well for you too.
20
Michael Ventu on
June 24, 2024
Hi Michael,
Thank you for giving me hope, I have necrotising myopathy too, up to now I have only seen people doing fairly bad with this myopathy. My starting point was pretty similar to yours and I hope to get to your level in some time. The main difference is that I have antiSRP which does not respond well to IVIG.
Wish you all the best,
Michael
Just being diagnosed with necrotizing myositis your story is very encouraging. It gives me hope that I will be back running and playing with my three kids soon. Being 35 and having limited mobility with three children has been heartbreaking. Thank you for posting your story.
Thank you so much for sharing. You are the first person that I have seen with NAM tell their story. I will say that it gives me hope. I was diagnosed back in late May. I have only been on medication for 3 weeks now. But I will for sure ask about IVFG treatment.
Hello Michael,
My name is Rico and I have Statin Induced NM. I don’t know how long I’ve had it but my pain started in March of this year. My question to you is when you started exercising did it make your CK numbers go up. Physical therapy has been feeling like I’m making progress but my wife thinks it makes my numbers go up `thus making it worse. Therapy is the only thing that I feel has given me hope because we’re still trying to get the right combination of medicines. I’m at 8000, 3- weeks ago I was at 5800, Did your numbers fluctuate with your exercise?
Can you clarify the name of the doctor again? Mammon? I could hear it clearly.
Hi Mike,
I enjoyed your video very much. In mid June of this year I started have leg and thigh issues. It felt that my muscles were getting weaker and i started having difficulty walking. It though it was because I was over working as a property manager. The symptoms got worse. I went to my primary Dr. , he did some test and found my CK level was at 897. I had been taking statins for years so he told me to stop taking them and to see if in a few weeks the weakness went away. It didn’t. I figured it was time to see a rheumatologist . He ran all the anti body tests on me and they all came out negative. However my CK level had risen to 1297 and my Aldolase, another marker for muscle inflamation level was high at 10.8. He suggested I get an EMG from a neurologist. I did ,the test revealed that my muscles were firing normally and working properly. My rheumatologist scheduled an MRI of my thighs ,to see if it shows signs of Myositis. I am getting that MRI this week. If the MRI shows Myositis he want to start me on a prednisone regime . Any advise will really help me.
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.
Is that what your first symptoms were of tightness and stiffness? I have had dermatomyositis without the muscle issues for over a year now and about 4 months ago, I started getting stiff and my range of motion got much more restrictive. My hamstrings are so unusually tight and I can’t reach parts of my back I used to be able to. My hips are extremely tight and it is slowly getting harder to climb the stairs. I painted a room last weekend and I had to keep stopping about every 10 to 15 minutes, which is not like me. I see the rheumatologist about this tomorrow. Very nervous.
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
Hi Everyone,
Well my life of Myositis recovery continues. It is two years since I made this video and thankfully I am still very strong. My CK levels do vary from 300 to 2000 but I feel like I am 90% of what I was before myositis took over and I only see it staying this way.
If your symptoms are similar to mine, you have great hope. I credit my diet, my exercise routine, my treatment, my kids and my beautiful bride for getting me to this point. I do think about this disease every day but I don’t let it slow me down.
Bhavna, the IVIG treatments took care of the dysphagia. I don’t seem to have it anymore.
Cherry, the CK levels seem to correspond to the level of muscle weakness. I tend to think they are different for everyone. I did mention in the video that my CK was well over 10k when I broke down. I have seen them go back down to 200 and then back up as high as 6k again without noticing anything. Lately they have been around 1k but I am still strong.
Mary, my lower back aches a bit but I don’t think it is related to myositis. My muscle pain was where my torso meets my limbs and also my calves. Dysphagia persisted at the time but that was never painful, more like uncomfortable.
Hey , your story has really motivating. I have been diagnosed with Myosotis recently in June 2023. From last 1 year have been struggling but the diagnosis was taking time. My doc are planning for IVIG and I am really looking forward to this treatment. I am sure I will gain my strength back. Please pray for me.
Hi Michael.
I have the same antibody and symptoms as you and I am about to start IVIG.
You mention your diet helped in your recovery – what changes did you make to it?
Hi Michael.
You can say that I am following the Mediterranean diet. My wife has been giving us both leaner options and I have come to like it very much. She always says everything in moderation so I still do enjoy pizza and beer on the weekends 😉
I hope the treatments work out well for you too.
Hi Michael,
Thank you for giving me hope, I have necrotising myopathy too, up to now I have only seen people doing fairly bad with this myopathy. My starting point was pretty similar to yours and I hope to get to your level in some time. The main difference is that I have antiSRP which does not respond well to IVIG.
Wish you all the best,
Michael