Early DM

[Catpuss66]

Not diagnosed yet, but have signs, grottons sign on knuckles, mechanics fingers( think on feet too) rash in scalp very itchy, flushing on face that lasts for 24hrs then disappears ,rapid weight gain, breathlessness, which makes my temperature hot & weakness in back of thighs that is worse some days than others, kinase has come back normal but from what I have read that is not unusual , positive ana, positive Ro ( have sjogrens aswell) now been sent for is it DMG? , was any else treated at this stage, or that everyone ended up in hospital before you were diagnosed?

[hopegalore20]

Hello Catpuss66, all the symptoms that you described, I can relate to 100%.

Dermatomyositis is a difficult disease to diagnose as it is quite rare. It took around 6 months back and forward to my Doctor, then eventually I got to see a Dermatologist, I was diagnosed with DM. I don't think my body could have coped any longer without medication, it was a blessing to see this Consultant.

I hope you see a professional soon and get the right treatment for you.

Good Luck.

Take Care x

[periwinkle62]

Hi Catpuss

I got ill with a virus then developed all sorts of weird symptoms - 20 hour a day hiccups, itchy torso, burning, prickling, scabby knuckles, red dry skin below the elbow. By that time I had also been diagnosed with a gallstone which muddied the water somewhat. The GP thought I might be having an allergic reaction from the gallstone meds. I wasn't eating or sleeping and I got so ill, I ended up in hospital - they suspected an infected gallbladder. It wasn't infected but I was kept in on oxygen due to poor breathing. Blood tests and scans revealed the anti jo antibody plus lung disease. I was told I had dermatomyositis and likely antisynthetase syndrome. The only positive is that I have lost shed loads of weight ha ha.

Keep reading up and plugging away for tests. Even the experts sometimes seem to disagree but you'll get there in the end. Good luck!

[Catpuss66]

Thanks both was starting to panic I would get no replies.....billy no mates! So thanks for replying . My rheumatologist is quite open to suggestions which is refreshing he likes that I take pictures , now sent me to derm and also to get an EMG? I think it is, thanks to this site and the Facebook group I know what all these things are, even though I work in a hospital all these things are new to me. The one thing I have had weight gain very rapidly in a short period of time some of it odema , and I"vet got gallstones due to the kidney disease. Never ending isn't!

[Doralora]

Hi Catpuss66, I am in a similar situation. I have had chest pains at rest and on exertion, frequent episodes of airlessness where I couldn’t get enough oxygen, rapid weight gain and blood pressure up then down, face flushes and the rashes on my hands. They thought initially I had heart problems but was given the all clear earlier this year. That’s when I got an appointment with a rheumatologist who sent my blood away for Myositis testing because I mentioned tired and aching muscles and lack of strength and showed her pictures of the rashes and reynauds. It has come back with antibodies for overlap syndrome with Myositis. Just waiting to see if there are signs of lung disease but it’s all in the air at the moment. My only comment to make was I didn’t need hospitalisation it was found early partly because I started documenting the symptoms in pictures after being frustrated that I didn’t have any blood tests come up positive ( oh then you must be pleased the doctor said, but my comment was that negative blood tests don’t mean the symptoms stop). It’s only been a few days since tests came back, but after many years of complaining I have an answer to all the wierd symptoms.

Good luck with finding out what is causing your symptoms I was told at one point by the doctor that I had to wait for something serious to happen because they couldn’t find any positive test results. Luckily that has not been the case for me and I wish you all the best.

[Catpuss66]

Thanks for reply, good to know I am not alone, I have had some positive blood tests, ana positive and Anti -Ro positive, but think it is early days early days in comparison to other people , have to say I may have DM with an overlap of sjogrens , the rash on my hands only appeared since october, I just don"t want to wait until I am very poorly, I still have to work and pay a mortgage , just want a diagnosis then I can get treated and stop it in it"s tracks hopefully. Wishing you well n your journey too, keep me update with your progress.