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Myositis UK
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Awaiting diagnosis

Hi im new, 48 male i hope its ok to post as im awaiting diagnosis and my ck results.

Then i assume its EMG and biopsy. Am i right in thinking ck result can come back normal for myositis? Or will it always be elevated. I think i may may have dermatomyositis as i have skin problems.

My story starts a few years ago. I have been fatigued and struggled to do things for at least a few years but as i have a desk job so ive managed. Then this summer i noticed a rash on both arms that flare up in the sunlight (feels like a bad sunburn, red and almost ulcered, very painful) and also my knuckles and elbows are very dry and beginning to have hardened skin on them.

A couple of months ago, i noticed a pain in my knees and that i have problems getting up from a chair. Its not just weakness its a pain that is actually quite sharp right on the patella. The pain runs right down my quads and into my knees on both sides. I am laid in bed now and all i can feel is my throbbing quadraceps. I took the dogs for a walk earlier so i think i overdid it. It was only 15 minutes but was a hill on the way back. I can seem to walk ok without pain but quads feel tired when i get back.

Ive noticed my quads are definitely thinner than they were so the wastage has definitely started. I also get a pain below my knee cap but i think thats just referred pain. This pain is definitely increasing.

In the last week ive also found my arms hurt if i have them up for any length of time. I also have back pains in the left shoulder blade area that ive had for a couple if months too.

So what worries me is how quick this pain has come on and how quickly it seems to be progessing.

I have read that when myositis appears after 45 its usually quite slow progression but this seems to be getting more painful each week.

My main worry is being able to continue to work. Ive read many posts on here and am alarmed at how many are so badly affected they needed to stop working. I have a young family and a mortgage so definitely need to work as long as i can.

Does anyone have any good news about this disease? How well does the prednisone work?

Is it true that prednisone can give 50% patients remission?

If prednistone works does it allow you to get muscle mass back or is that gone forever?

Am i allowed to drive with dermatomysitis or do they take away my licence?

I am scared stiff i will end up in a wheelchair or bedridden unable to move and rely on carers to feed and clean me.

What happens if my ck comes back normal? How can i convince my gp to send me to a specialist, he may just think its a bad knee that will go away.

Has anyone carried on working with this disease and if so how long were you able to work?

Thanks

3 Replies
oldestnewest

Hi,

Yes you can still drive with Myositis , steroids are brilliant at reducing inflammation fairly quickly then immune suppressant drugs keep the disease at bay .

If you get on top of it as soon as you can you can halt its progression .

I’ve had PM since 1999 and I was terrified that I’d loose Mobility and end up in a wheel chair but this hadn’t been the case at all.

I’ve remained mobile all these years , I ache and have some weakness and fatigue , you need to see a Rheumatologist and preferably a Myositis specialist Dr because this is a rare disease.

You can live a fairly normal life with treatment , I hope this helps .

Helen .

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I have I.B.M. which you may have read about on this site, so lots of things different to you but similar needs. As Helen says you must get your doctor to refer you for further tests. I live near a major hospital where the Consultant specialises in all things Myositis so was fortunate that once my doctor referred me on I saw a Consultant and the following week was in hospital for five days having numerous tests, as he reckonised I.B.M.! This was in 2005. I was working at the time so this rush was a bit unnerving. After tests the Consultant said he was fairly sure I had IBM and if so I would be in a wheelchair within six months, relying on family for everyday help! Fortunately this turned out to not be the case as I am still on my feet (well most of the time - occasional falls). I was put on steroids for two years and then overlapped with Azaithiaprine until I gradually came off both in 2011 and am on no medication for IBM now. My health has deteriorated but I try to stay positive and continued to exercise. The amount of walking I now do is nothing like I used to do but I still do it, slower and carefully, with help from friends. Each year I see a consultant and he still cannot understand how thirteen years later I am still getting about. I had to notify DVLA about I.B.M. once I got the official verdict but after a lengthy wait, where they contact the Consultant, I got the O.K. to continue to drive. Two years ago I changed from a manual to an automatic as I struggled with changing gear and putting handbrake on. Automatic with all the extras now available have enabled me to continue to drive.

So the bottom line is we are all different but staying positive and trying to do as many things that you used to do before diagnosis is vital. Do not give up and think your life is over. You need to support of friends and family but with help its not so bad.

Good luck in finding out whether or not you have any form of Myositis. Keep this forum informed. Ask any other questions you need to know.

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Thanks stillhoping.

My ck has come back at 204 so just above normal range. I too worry mine is ibm as the pains are in both quads and both hands.

I think the skin rash is a red herring and is just a sun allergy as i have bo skin problems except my arms and dry skin on my knuckles and elbows, none where dm usually affects.

Did you get pain in your knees? The pain in my knees is the worst bit. It hurts so much to bend them. I definitely have muscle wastage in my arms and thighs. My thigh is almost the same size as my calf and they are small.

I can walk ok but my left knee and thigh feels loose. Im wondering if the knee pains are because my thigh muscles are no longer supporting the knees. I notice if i bebd my knees and my thighs take the weight of my body that within a few seconds they are shaking. There is a sort of ripple going through the thigh muscles.

Ive tried light exercise and stretches. I have noticed i can do squats easier if i lean back and let my thighs and glutes do the work instead of my knees ( i do this in the bathroom and hold onto the sink as i lean back. Making sure im not using my arms to pull me up just to help with balance)

Ive sort of reached a plateau at the moment. Definite weakness in my fingers/ wrist/ forearms and in my thighs (left side much weaker). Im not going downhill fast but slowly over a few years and only just elevated ck leans me to sIBM. I havent fallen yet but my left side has given way slightly twice now as i walked down the stairs so ive started to concentrate on my walking whenever im on the stairs.

I see a rheumatologist on the 20th November. I dont know if to tell her im worried it may be sIBM as she may just then think its all in my head as its so rare although i am 48.

As im seeing a normal rheumatologost rather than myositis specialist im worried they may miss signs and instead assume i need physio or tests for arthritis.

Does my symptoms ring any nells with anyone else. Also, any tips of what i shpuld say to the rheumatologist to get the ball rolling. Ive had an xray on my left knee 2 months ago and it came back ok as not arthritis.

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