Newbie here!

Karawen

Hi all, Karawen here.

I've only just discovered this group.  I was diagnosed with FSH Muscular Dystrophy in 2011, it's taken a few years to get used to the idea...

Anyone out there with the same condition?

Anyway, just wanted to say hello ?. 

janer1967

Hi and welcome to the community 

Feel free to join in or ask any questions 

I'm sure you will find others who can share their experiences with you 

Karawen

Thanks @janer1967 ?

chiarieds

Hi @Karawen - & welcome to the community. Sorry, I haven't got your disorder, but wondering how you're coping, & if you have any specific questions.

Caz_Alumni

Welcome to the community @Karawen! A big hello back from me

Great to see that you've already started getting to know a few people on the forum. But I know that you're keen to connect with others who might have experience of FSH muscular dystrophy. Hopefully, there'll be some members who spot your post and get in touch. In the meantime, you might want to have a look around the community. Maybe get involved in some of our different discussions? Or pop by the Coffee lounge to have a chat? 

It would be nice to get to know you a bit better as well. Do you fancy telling us a bit more about yourself maybe?

Ami2301

Welcome to the community @Karawen

Karawen

Thanks guys ?...

So I'm 41, diagnosed in late 2011 after years of back and forth to the Drs and a misdiagnosis.

Divorced in 2012, 2 children, 2 grandchildren.  Live with my partner who also has 2 boys and our choccy lab, Coco.

FSHMD for those that don't know, is a degenerative muscle disease that affect specific muscle groups.

I've always been very independent despite my condition, no mobility issues (yet).  I do have varying degrees of pain and discomfort but as with anyone, some days are better than others.  My shoulders are the worst affected which bring with it physical limitations as range of movement is limited. 

It has taken me a few years to really come to terms with my diagnosis but I think I'm there now.  My job makes me realise just how fortunate I am as I work in finance for the NHS within the continuing healthcare team.  

And that's pretty much me ?.

bankstoe

Hi @Karawen

Yes, I have the same condition as yourself. I am also new to this site and didn't have any mobility issues until around 4 years ago. I have just turned 50 so it was around the age of 46 when i started to notice something was going on. I was diagnosed around 2003.

I was wearing foot ups for a few years but now i have AFO's on my feet now to help me walk.

I lost my job due to my condition as I was a Police Officer for nearly 28 years on the front line and was quite fit and active and then all of a sudden things began to change.

I get support now from the Neuromuscular Centre in Winsford, Cheshire 

Karawen

Hi @bankstoe

I'm so sorry I must've missed your post somehow?!

It's nice to link with someone else that has the condition.  I imagine it must've been incredibly tough for you having to end your career in the police ?.

I'm very lucky in that my job is a desk job and I mostly work from home.  No mobility issues (yet), although I struggle with some day to day activities.  

I moved county a couple of years ago and have had a nightmare with the GP and feel as though I've fallen through the gap as I'm now no longer under anyone and get no support.

bankstoe

I don't go to the GP anymore. I attend the Walton Centre in Liverpool and the NMC in Winsford

Karawen

My diagnosis was 10 years ago this October but I was only referred to a neuromuscular centre yesterday (at my request having seen your post, so thank you).

Hopefully I'll get better care/ support.  Just a waiting game now ?

bankstoe

Yes the NMC will be the best as they know all about your condition and will help you with physio etc.

I was diagnosed around 16 years ago and had issues but could still manage and do my job. It has been the past 4 years which has been the worse

Karawen

That's good to hear re the support!

I'm perfectly fine mobility wise, thankfully (at the moment) but things are changing and becoming more difficult.