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dermatomyositis

3 REPLIES 3
Agate
Member

Re: dermatomyositis

Dermatomysitis is one of those conditions that prompts doctors to look for a hidden cancer- rather than cancer turning up first, as in your case. Be sure to find a specialist who knows about it; adequate treatment for common cancers is widely available, but dermatomositis is a Cinderella by comparison. My mother had a particularly aggressive polymyositis (that is, no skin involvement) without an underlying tumour, and I recently checked out how much information was on the professional web; not very much. On the positive side, you have been diagnosed, presumably fairly early. My mother’s symptoms were regarded as hysterical (menopausal widow!) for years then wrongly diagnosed as an untreatable form of muscular dystrophy (to be inherited by 50% of her children) for more than a year, so permanent damage to muscles was extensive by the time treatment began, but even so, she lived 18 years longer than she would have untreated.
Chick1
Member

Re: dermatomyositis

yHello Bev,

 

My goodness - never heard about Dermatomyositis before and I doubt many people have.  So sorry to hear that you have been diagnosed with this.  It also sounds like you went through a very uncomfortable time before getting the diagnosis.  Hope any treatment is now alleiviating at least the worst symptoms if not all.

Fingers crossed for you that you do have a milder variant of this condition and that your muscles are not affected. 

 

It's just feels bleeding relentless does n't it?  You get through all the treatments, you look to moving forward from it all and instead you end up with another condition that can debilitate you on top of all the other crap you are trying to deal with.  Isn;t it amazing how much we can take!!

 

I hope you can access some direct support for this.  I see that there is a Myositis Uk site at www.myositis.org.uk   You problaby know this already.

 

Take care Bev and wishing you all the best,

Chick X

 

 

 

 

ann-m
Community Champion

Re: dermatomyositis

Well, obviously, that is something you could do without, Bev.

At least they've got to the bottom of it & hopefully it will start to improve soon now treatment can start.

Wishing you well with it all.

ann x

 

 

 

Bev H
Member

dermatomyositis

Hi , finished all treatment for breast cancer this Jan, couple of hiccups but felt was on road forward. Since diagnosis(march 2017) have had problems with sore skin - fingers round nail beds, forearms, jawline and neck. Was put down to stress from diagnosis and subsequent treatment. Gp treated with emoillent and steriod cream, did notice slight improvement during chemo as had steriods with each cycle, however never really went away but began to spread to knuckles, elbows and accross top of my back, Areas incredibly itchy and painful at times. Had referral to dermatologist, skin biopsy and bloods taken and diagnosed with dermatomyositis - an autoimmune inflammatory condition that can be triggered by certain cancers - breast being one of them. It attacks the collagen and muscles fibres. 

Am waiting to see if I have type that just effects skin or muscles as well.

Am furious, feels so unfair. Its not a common condition.

I got through cancer treatment so I guess can deal with this. Just not ready for yet another battle. Having body image issues, (my scar is really good,) weight gain, hair change and skin that looks like have been in a scalding hot bath!

Have ranted have cried but guess am still here x