Myositis UK

Just been diagnosed with polymyositis

Hi need help been working all my life I am a 44 year old male with diabetìc all my life I have just be diagnosed with polymyositis the last month and it is so painful I have it in the legs upper arms neck stomach and throat I live in n.ireland and was thinking about apling for this PIP payment what are the chances and is there any other help I can get for this condition

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Hi there Gtn. I am sorry about your diagnosis. First thing to tell you is that there is life after diagnosis with PM and treatment. Don't give up your job or do anything rash right now as you will feel differently in a few months. I presume you are being treated by a Rheumatologist. You really need a very good Rheumatologist who understands this disease and how to treat it, have you had a full work up looking for any underlying cause if your illness. Have you been tested for antibodies as the antibody you have or do not have directs the treatment and management of your illness. Do give me some more information about what stage you are at. Try not to read the Internet, it's full of worse case scenarios and scared me to death. I was diagnosed 5 years ago and I have the Anti Jo antibody. I am well and stable and back to where I was before the treatment. It takes time but with the right doctor and the right treatment you will get there. Best wishes. Mary

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I am waiting on more blood test to come back for the antibiotic plus they took three muscle biopsy from my leg I am on steroids at the minute and it's helping with the pain but there still seems tonbe a weakness in my legs they put me on 80mg of steroids and a dose of other tablets for bones stomach and stuff I am also a diabetic and I know it will be months before I could even think about going back to work but find it very off putting trying to claim for PIP because I need help still with dressing and washing even making food

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Hello, sorry to hear about your diagnosis. With treatment many do return to work; I did after a period of time despite being very poorly when diagnosed and 24 years ago very little was known about the condition.

Myositis UK have a benefits advisor available to members (membership is free), the number can be found in the newsletter. myositis.org.uk/

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Is it the contact number inthe site that you phone it says it's a answer phone because I can't find any number for the help line

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Hello

I live in NI and I have JO-1 Syndrome and Polymyositis. I was wondering if you were able to get PIP benefit when you applied.

Regards

Fleetwood49

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I got pip and when I was seen I made.them do a home visit and had one of my worst days never moved out of bed and hardly answered any questions my wife was there to talk to her about my condiation but it's a very bad system as inam.still.not fit because I had a bad flare up after Christmas and still getting extra treatment for.it but no ectra money

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