Hello

[Bronte007]

Hi

I have been diagnosed with an anti synthesase syndrome with features of myosotis. This was diagnosed following what was initially thought to be a chest infection / covid pneumonia in December.

my rheumatologist thinks that exposure to covid has triggered my autoimmune disease which includes lung disease . The good news is that my health has gradually improved. I now only really have ‘mechanics hands’ and some joint pain as symptoms. I have pulmonary function tests next week and depending on those my lung specialist and rheumatologist will decide if I need to go on any treatment. I’m hoping not as I work with young children and am worried I will get unwell with all the bugs I come in contact with ! I do not have any muscle weakness and hope I won’t !

I am considering seeing a dermatologist to try and get a topical treatment for my hands.

I’m hoping to get some support on this forum and also some positivity as everything I read is so depressing!

Rachel

[Jo-Goode Administrator]

Hello Bronte,

Sorry to hear of your diagnosis, glad to hear you have already made improvement. Try not to look at info online too much, a lot of it is out of date & although it's important to have good care, once you connect with those with condition you find it can be a lot more positive than the bleak picture online. There are are a couple of Myositis Centres (London & Manchester) Kings College in London has a very good dermatologist (Dr Creamer, a perfect name for a derm!) & I would highly recommend Dr Patrick Gordon at Kings also. There are several other consultants around the UK who have experience in Myositis. If you look to the left I put a list of doctors on a pinned post.

There are a couple of groups on facebook that may also interest you, as you will find many more with Antisynthesase Syndrome (known to us as ASS!). Fist The Myositis Community of Great Britain & Ireland; it's a UK only group that I've run for a number of years. facebook.com/groups/themyos...

Second: AntiSynthetase Syndrome Support Group; it's a worldwide group, admin are from UK (Patricia) & Australia (you will have to reply to a personal message to join) facebook.com/groups/Antisyn...

Regards, Jo

[Bronte007 in reply to Jo-Goode]

Hi Jo

Thank you so much for taking the time to reply. Where can I find the list of doctors please ?

I will definitely look into the groups. I have pulmonary function tests on Friday . I’m hoping they are ok and I don’t need drug therapy. I’m also worried about the cancer link although my rheumatologist said nothing to me about this

Thanks again Rachel

[Jo-Goode Administrator in reply to Bronte007]

Here's the list. I've just noticed I did this 6 years ago & slightly needs updating, e.g Prof Bob Cooper has since retired. healthunlocked.com/myositis...