Suspected myositis

Maybe you guys can help me out, I've already been diagnosed with lupus but for the past little while I've noticed gradual weakness in my upper and lower body although so far finding it much worse in my arms shoulders and upper back area, I've been dropping dishes whilst trying to wash them because they're just too heavy and can hardly manage to take my dogs out anymore, crocheting is my biggest hobby and even that is proving too painful at the moment, I've also had a bit of a dry cough as well as a lot of peeling of the skin on my fingers not sure if it's related but it seemed to pop up around the same time as the other symptoms, any insight would be greatly appreciated :)

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  • Hi there. Sorry to read your post. I was diagnosed with Polymyositis and the anti Jo antibody five years ago with exactly your symptoms. I suggest you see your GP and ask for an urgent referral to a Rheumatologist to check it out as early diagnosis and hitting this hard and fast bring best results. Lupus and Myositis do often go together. I am not a doctor and could be very wrong but do get it checked out. Best wishes. Mary

  • Thank you so much for your reply, I already have a rheumy who has been helping me with the lupus the problem is he is very overbooked, I was already supposed to see him this month and they haven't even called me with an appointment yet, I'm wondering could my doctor give my rheumy a call to let him know I need to get in sooner rather than later? I'm feeling pretty worried and was thinking the same thing that if that's what it is that I really need to start treating it ASAP.

  • I am sure if you see your GP and explain what us going on he will arrange an urgent referral to your Rheumatologist. You could ask your GP to run some bloods including Myositis Specific Auto antibodies. Don't leave it, check it out. Let us know how it goes. Best wishes. Mary

  • Contact your rheumatologist's secretary and explain your situation, so hopefully you can get an urgent appointment.

    Your symptoms do sound very much like Myositis, so as soon you are seen the better.

    I would also suggest getting a referral via your GP to your nearest Myositis specialist (this information is copied from the pinned posts).

    Myositis specialist clinic/centre

    To request a NHS referral/second opinion via your GP (in the unlikely event your GP is uncooperative, a way round it is a one off private consultation with the Myositis specialist, and they will write to your GP on your behalf).

    London Kings College - Team lead by Dr Patrick Gordon, Chairman of the UK Myonet group (the research/advocacy group of doctors and researchers in the UK). Dr Gordon is a Myositis UK adviser Specialises in Dermatomyositis, Polymyositis, adult JDM, also holds joint Myositis/lung clinic for ASS at Guys Hospital. For NHS referral request via GP. Info on Dr Gordon & private referral/one off private appointment link: kingsprivate.com/…/rheumatolo…/dr-patrick-gordon/

    Manchester

    Salford Royal - Dr Hector Chinoy Specialist in Dermatomyositis, Polymyositis and Adult Juvenile. Member of the UK Myonet group (the research/advocacy group of doctors and researchers in the UK). Myositis UK adviser

    hectorchinoy.co.uk/index.ph...

    finder.bupa.co.uk/Consulta…/…/160523/dr_hector_chinoy

    manchester.ac.uk/research/h...

    Bristol - Dr Harsha Gunawardena. Specialist in Dermatomyositis, Polymyositis and Adult Juvenile. Member of the UK Myonet group (the research/advocacy group of doctors and researchers in the UK).

    nbt.nhs.uk/…/a-z-consulta…/dr-harsha-gunawardena

    Private: spirehealthcare.com/…/our…/dr-harsha-gunawardena/

    Liverpool - Professor Bob Cooper. Specialist in Dermatomyositis, Polymyositis and Adult Juvenile. Member of the UK Myonet group (the research/advocacy group of doctors and researchers in the UK). Adviser to Myositis UK.

    liverpool.ac.uk/…/staff/musculoskeletal-biology/

    Bath - Professor Neil McHugh, Royal National Hospital for Rheumatic Diseases. Specialist Dermatomyositis, Polymyositis and Adult Juvenile. Member of the UK Myonet group (the research/advocacy group of doctors and researchers in the UK).

    bath.ac.uk/pharm…/contacts/academics/neil-mchugh/