Hi Guys

[mrdarcy1]

Hi,

Well where to start??

My left eye went purple /red a few weeks ago and we thought it was an eye infection.

5 day course of antibiotics and it seemed to be going away.

Went for a haircut and the eye was just looking slightly purple a few hours later my eyes start to sting a little and I go to sleep and wake up and I've got these 2 panda eyes.

The upper eyelid and down to my cheekbone.

It's in the derma layer and not on the top of the skin.

I'd been thinking I'd been loosing muscle mass for a few months and put it down to the fact I'd had a few DVTS some spinal problems and my mobility is not the best.

I was getting this red colour on both my knees one day and it would be gone the next. Same with my elbows.

The redness, was like someone put a big red patch over my knees and elbows

They are both dry and scaley.

I put this down to my allergy to UVA/UVB sunlight.

I felt pretty tired after walking any distance and always felt shattered and would have a nap and still do in the afternoon.

I would get a really painful fingers and toes at the joints and no matter what I did it wouldn't make any difference it would go the next day or two on its own.

The bottom of my feet about half way up the whole bottom of my feet would also go this purple colour now and again and the next day it was gone also.

Again I put this down to the Dvts andy blood flow.

So every time I was going to tell the doctor it was gone and put it out of my mind.

I have also had this feeling that I wasn't eating right.

I would feel as if I had to swallow my Adams apple a few times to get it to work again.

Just swallowing my own saliva as everybody does, this has happened a few times and it's really worrying at that point, as it won't seem to get over the Adams apple part of my throat.

(I hope you all understand what I'm describing?)

Anyway forward to the 2 panda eyes and looking and feeling so tired.

Because of my skin problem already I had access to my dermatologist and took pictures of my eyes and he had a look and said he suspects I have "Dermatomyositis" he did a test for this in 2021 as I was having skin problems.

Came back negative.

So he thinks going with my pictures and my symptoms it's definitely (Dermatomyositis)

so I did the usual straight onto the internet and did a search.

This was Thursday he has sent letters to dermatologist department and my doctor telling them to do the tests for this.

Spoke to my doctor yesterday and he has organised the tests for Monday.

It's all happened really fast and I was just looking for information.

1/ symptoms, are these the symptoms and what other things to look out for/may happen in the future.

2/ what's the process, if it comes back positive

3/ what's the outlook and treatment going forward.

Sorry for prattling on and wish you all the strength in the world.

Kind Regards & best wishes

[Jo-Goode Administrator]

Hello Mr Darcy,

I'm afraid not many active on this web based group, which was why I started a UK group over on facebook, which has proved to be very popular. Here's a link facebook.com/groups/themyos...

I was diagnosed in my 20's in the early 90's & stable on treatment ( I had a long period in remission previously.

Kind regards,

Jo

Myositis UK Trustee/Treasurer

[mrdarcy1 in reply to Jo-Goode]

Hey Jo-Goode,

Thanks for the reply anyway, I'm not on facebook, never have been, swore I never would 😁

There's plenty of info on the internet as well and a great UK official small charity page.

So it's told me lots about this horrible disease.

I was just wanting to know, from other suffers what's in store for me.

So many different types you can get as well.

You've had this since the 90s? Woooow that's encouraging to me to hear.

I hope it continues to be so well controlled. 🙏

Thanks again and I wish you all the health in the world.

🖐️💪