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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
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 ?
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.
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