Living with Myositis: A Patient's Journey from Diagnosis to Management
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- Опубликовано: 5 окт 2024
- Join us as we delve into the powerful and personal story of a courageous individual living with myositis. In this heartfelt video, our guest shares her intimate journey through the challenging world of chronic illness, from the bewildering first symptoms to the arduous process of diagnosis. She opens up about the struggles she has faced, the treatments she has undergone, and how she manages her condition on a day-to-day basis.
This candid narrative provides a window into the ups and downs of life with myositis, including the physical hurdles, the emotional toll, and the impact on personal and professional life. Our guest discusses the importance of support systems, the role of healthcare professionals in her treatment plan, and the adjustments she's made to cope with the realities of her condition.
Beyond her personal struggles, she addresses the broader issues facing the myositis community: the need for increased awareness, the search for more effective treatments, and the hope for a cure. This video is not only a source of information and inspiration for those affected by myositis but also an educational resource that sheds light on what it means to live with a rare autoimmune disease.
Whether you are a patient, a caregiver, a healthcare provider, or simply someone interested in understanding more about this condition, this video is a testament to the resilience of the human spirit in the face of chronic illness. Subscribe to our channel for more insights and stories about myositis and join us in a community of support and hope.
#MyositisJourney #ChronicIllness #AutoimmuneDiseases #PatientStory #HealthAwareness
Thank you so very much for sharing this information. Bonita has given a great example of what a patient deals with on a daily basis.
Thank you for an honest and insightful discussion. This disease, in it's many manifestations, truly is life changing when diagnosed and is ever evolving. I was diagnosed in 1998 and thankfully had a very astute dermatologist who was able to make the diagnosis quickly. I've "failed" many of the medications but do have a couple that keep me up and moving albeit with many symptoms that I just live with. It's made me live knowing each day is a gift and I try hard not to let it define me as the disease. Bonita, thank you for your story and candidness. You are an inspiration and your help with Myositis and Understanding is truly treasured.
I too have Cardiomyopathy with my Polymyositis as well as joint and muscle pain etc. Dr. Aggarwal has helped me from day 1. We tried ablasions on my heart to no avail. I like you have palpitations nonstop. ❤
Is there a blood test for this condition?
Best to see a rheumatologist
There are different kinds they do run and can see in some of them to get an idea and there is a Myositis panel but not everyone has the antibodies. So lots of different types of tests need done and also look at clinically. Myositis is not always text book. It’s complicated.
I definitely can agree with that muscle testing in office. They say I’m not weak yet I Get tested where they take the time in Physical Therapy and can wean down to my weakness which doesn’t always show in the tests in dr office. Plus my home nurse for my infusion has seen just how sick I am more than my dr too. A lot of times drs don’t believe us and say we are not weak when we know how it feels but because they push our arm and knee they decide we are not. That is not right and there has to be a better way or have drs believe patients. I’m not sure but there is a lot to be said and work needed on that. I love the idea of using technology today to make it more patient centered. Sorry brain fog and I can’t access the words of want to say. I have Dermatomyositis. That is one symptom I didn’t hear but I know many of us patients have and it makes it hard to communicate with drs or anyone sometimes. I believe that a lot of it is the fatigue and from that causes brain fatigue, muscle fatigue, all over just full system fatigue. It is so hard like BAnita said to know day to day how we are going to feel and whether I can manage or not. My disease is so complex and a total roller coaster. I can be so good one minute that you wouldn’t know I have anything wrong to the next minute falling over and bed ridden. It can change so quickly. It makes me feel like drs think it is one way or another and when they ask us questions our answers can very for every symptom depending on so much. So it’s hard to explain this. We can say yes I get nauseous when this happens but sometimes i don’t. My symptoms are so crazy and all over the place that I feel crazy saying it. An answer to a question can be yes and no all In one. I agree about drs needing more education for diagnosis. I was sick for 15plus years dr after dr with so many weird symptoms. Because I didn’t have a positive ANA about 10 years ago the Rheumatologist that my family dr try to get me in would not even see me. So I didn’t have to suffer as long if they were more knowledgeable. Dermatomyositis doesn’t have to have a positive ANA. Anyway I’m glad your talking about this because this disease it so complex. My drs still haven’t even talking to each other. I am hopeful that I can one day get a good team. One that also lets me be a part of it. That is Is very important. I’m the one that has to live this life and my opinion matters. After all, I’m being seen to hopefully get what I consider a better quality of life.
So right now I’m waiting to be treated and flaring because my bloods all got too low and my Rheumatologist needs a hematologist opinion before she can treat me anymore. I have to wait to see them before we can do anything else. I am off my DM med except for subq IG now. Rheumatologist doesn’t know what to do when immune suppression medicine is causing it to be low or it is something else. DM can actually cause the low counts itself and need more immune suppression to help it. Yet it is lowered or stopped because there is no way to know if it is caused from the immune suppression or the disease itself. I have a lot to say about all this. I believe these systemic diseases need to have a lot of different specialists involved and need specific training in Myositis and the specialty. So we need more drs to train in how Myositis affects each category and full body. I don’t know if that make sense but I tried. Myositis is not just a rheumatologic disease. It can affect every part of the body. I too believe I need checked for gastroparesis. The sad thing is most of the time the doctor where I'm from anyways don't even recognize these problems patients can have and if I didn’t learn my condition and pay attention to my symptoms and advocate for myself and question what could be happening, it seems I would not have any diagnosis and I would have died and believe I was close. It is sad that I went to dr after dr and only when I started really paying close attention and researching myself is when I started finding answers. I see a lot of people that this is not the case and there drs are on it. I think it definitely is different from area to area and dr to dr.
I've been trying to get some information out, it seems there is a link between congenital ptosis and dermatomyositis and it could be also for other myopathies. Could the gene responsible for ptosis lead to these conditions ?
Does anyone know if calcified granulomas in The lung have anything to do with interstitial lung disease or Myositis? It is something that can happen when disease is not well controlled? Is it totally separate issue?
I’m surprised how is hard for some people to live with this condition. I have Mayositis necrotizing myopathy and it’s scary hard to deal with this condition. But my rheumatologist is so wonderful and smart and she got me on a treatment that is helping a lot and of course God and doing my part . But I will like to know more about it and donor help or be help . My name is Carmen K
I have severe myositis
What do you do? Like pain, symptoms, treatment