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Dermatomyositis

Autoimmune Diseases | Last Active: May 29, 2022 | Replies (23)

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@kathrynmc

Nance, I am not on medication for high cholesterol, and I do not have Desesthesia. My primary doctor diagnosed me with DM with MDA5 antigens. I had all of the classic symptoms, the most telling was the rash on my hands, I also had the “Shawl” rash. I also had shortness of breath and muscle weakness especially my lower body. My biggest concern is ILD, I was referred to rheumatologist and pulmonologist specialist by my doctor. They have been treating my ILD aggressively. I was seen at Mayo in September of this year, and got good news, my lung function was stable, even a little improved since my last test in April. So I am staying on current treatment, unless there is progression with my ILD. It’s truly been a life changing journey for me since my diagnosis in January of 2021. Thank You for reaching out to me Nance, I pray that you are doing ok, it gives me Hope!
Trying to take things One Day at a Time! Sometimes easier said than done!
Kathryn

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Replies to "Nance, I am not on medication for high cholesterol, and I do not have Desesthesia. My..."

Kathryn, I am so sorry to hear of your ILD! I was not familiar with it so had to research it! I am always wondering from where these rare diseases are originating.
You seem to have better health care than what I have been experiencing.
My Derm and I have difficult time in telling my Neurologist that I have DM! It’s possible to have only the skin involvement without the muscle, which leads me to a question for you. How are your muscles affecting your lower body? Do you have an awkward walking gait? How about constricted hips or thighs? Sometimes I feel I am walking like a duck! Lovely! I have never spoken with anyone with DM, so I really appreciate your responses! Thank you...Nance