Clinical features and the course of disease in Inclusion Body Myositis, Dr Marianne de Visser

Myositis is often a challenge to diagnose, often taking years to distinguish from other disorders. This is especially true for patients with Inclusion Body Myositis, many of whom say they suspected something was wrong a decade or more before they were diagnosed. In this session from The Myositis Association's 2018 Annual Patient Conference in Louisville, signs and symptoms of IBM and the course this disease usually takes is discussed.

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💻 Originally aired 2018.

[marymyers]

My husband has night time leg twitching of both legs is this caused by his polymyocitis

[marymyers]

My question is, muscle twitching in legs during the night. Is this possibly due to my husband's diagnosis of polymyocitis? Or ibm?

[cherylcarlson]

Muscle and tendon pain were my sentinel concerns then noticed weakness. Have noticed where I have pain (9-11 scored) after a few months pain ends but dents and lost of mucle contour appear. Pain is not cramping, not relieved by analgesics but can fall asleep until cat applies weight and heat to areas, occurs mostly at night, feels very deep as if along the bone. Facial weakness was consistently discounted as not asymmetrical and "not that weak" but still is major when I get really tired and is called "apathy" when that is NOT how I feel. Facial weakness was 1yr before diagnosis and accompanied by difficulty breathing, now abdominal breathing and night time desats to 79, accompanied by low abd aching after trying to "push through" difficulty walking as 2 MD's said. The insult of minimalization is made worse by seeing they only documented " co fatigue and weakness".

[itisfinishednowtimetoclean]

In US, I would bet the prevalence of myositis is hugely overlooked in US, as costs/healthcare in the US, is woefully lacking as the healthcare is not as good in the US. Don’t want to demonize US care. There are always good doctors everywhere. But feel testing is not as available to us here. In my opinion its because it feels limited.. Our doctors who primarily have to work in our capitalistic platform are limited in time/focus and attention to detail…. Again, want to reiterate there are Great doctors, but due to time/money constraints cannot give appropriate diagnosis.

[Kitkat]

I have read some literature that says that in IBM, and this is especially true in woman at the beginning stages of the disease, that red vacuoles may not be present.

[davemessenger]

I’ve had this 10 yrs or more must have wheelchair and a board to transfer is there any restorative things a person can do? Hard to swallow and fingers don’t work.

[geraldinepowell]

I wish that guy who kept asking about his sx would have kept quiet.

[theresawaag]

Speaker seemed a bit impatient, hence the sighs when someone asked a question. Lol.