Myositis UK

Welcome to the new Myositis UK Community Forum!

Hello!

Welcome to the new Myositis UK community forum!

This forum will replace the old community forum on the Myositis UK website when the subscription to NING finishes next year.

Hope you like the new format and enjoy chatting to new and old friends about Myositis.

Jo Goode

Admin

12 Replies
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This looks like an interesting site and is much needed in the UK where we seem to have very little support. I can't find how to access discussions for Polymyositis on here, can anyone help me with that. I hope this is a user friendly site for us, it's long overdue and much needed. Thank you.

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Hello, This forum started on the 1st December, so currently there are no discussions for Polymyositis. If you would like to start a discussion, click write a post on the right hand side of the screen; then on the next page click add topic and you can select your type of Myositis.

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I am very impressed with the site so far and will do my best to sort how it works. Thank you for your reply, I followed your instructions easily. What a fast reply, most unusual with Myositis UK. Long may it last and thank you. Mary

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Great to have the forum here!

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Jo. How do I connect to other people with Polymyositis on this new site. Thank you.

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If you place a post hopefully someone will reply who has Polymyositis.

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So Jo, there will be no area to click on which deals specifically with PM or DM when we come to the site.

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If you look to the right hand side of this screen, the topics of DM/PM etc are there under pinned posts. I placed an information posts yesterday, so the topics are now appearing. Jo

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Jo, is there any way to save the posts from the old site? There was so much information on there from people who posted. In the U.S. they requested the old site be saved and it was, but you can't post on it anymore. We can still use if for information. Maybe you could do something like this. These forums are so helpful to us all.

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Hi all I have polymyositis can I request all my paperwork from my rheumatologist as I know things have been overlooked by my new rheumatologist I try to get my point across each visit which is only twice a year ...as she is like a super fast railroad train I would just like to have all the facts as I come out unsatisfied thankyou in advance .

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Hi Jo,

After a year of all the tests I have been told I have DM.

Can you tell me please of a specialist in Myositis in central London and also if there is one in Southampton?

I have numbness in my hands and feet 24/7 do you or anyone else, know if this is this typical of DM?

I was happy to find this site.

Regards Veronica

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Hi, Veronica,

Sorry to hear of your diagnosis; because Myositis can be difficult to diagnose, I do think once you have a diagnosis half the battle is won.

Ask your GP for a referral to the Rheumatology department at Kings College London, they have one of the largest Myositis clinics and it's led by a fab doctor, Dr Patrick Gordon. The Myositis team at Kings have far more experience than Southampton.

kingsprivate.com/consultant...

Numbness is not a symptom of DM as such, but we often get a number of overlap conditions and symptoms because of Myositis. I have struggled with Carpal tunnel syndrome in my hands causing pins and needles and numbness, often when having a flare of Myositis. I also have Raynaulds as an overlap that effects my hands and feet.

Regards,

Jo

I also run a Myositis facebook group, which is far more active than here that you also find helpful facebook.com/groups/2432609...

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