Polymyositis

After 4yrs of testing and 2 consultants the diagnosis is now probably polymyositis. However the CK reading was only slightly raised and they are now sending me for an echocardiogram? then a muscle biopsy.Are they really thinking polymyositis,why a heart reading and wouldn’t the CK reading be higher.Just hoping to get to the end of this testing and have a result.things are getting a lot worse and it’s getting frightening.

[English_Patient]

It's likely a process of elimination, the echocardiogram would determine whether there are any problems with valves or chambers in the heart itself, if not, a muscle biopsy may be more conclusive. Very difficult to converse about these matters because there is a natural inclination to ask this and that about your experience and yet at the same time it seems so wrong.

Just my tuppence worth. I hope they manage to help.

[Hidden in reply to English_Patient]

Thank you very much for your reply. I’m not really sure what I was asking maybe just to see if I was not now going down a wrong path. The first neurologist dismissed me with ‘can’t do anything for you,just take strong pain killers ‘despite telling him I had no pain for which he said the pain was there,I just had a strong threshold!GP persuaded me to go for 2nd opinion and that consultant was brilliant.She has done a lot of test but unfortunately it has now become difficult for my husband to drive the distance to her so she suggested I go back to my local hospital and see an ex colleague of hers ,who she rated highly. She said she thought it was polymyositis and she would ask for urgent appointment.Have not had contact from new neurologist yet but suddenly get appointment for echocardiogram. I’m just getting wound up ,it just seems to go on forever and was wondering if it was a mistake appointment. But thanks for replying.its nice to know someone is here to help

[Goldyukr]

I have never had a raised CK reading. Other than elevated ALT, my blood work has always been normal so it can be that in spite of blood work. My EMG and nerve conduction study showed the myositis.

[Hidden in reply to Goldyukr]

Thank you for your reply.my EMG just showed some peripheral neuropathy and the CK was only slightly raised,but it’s interesting to know your CK was not raise despite a positive diagnosis.—when or if I become a full member of this society,it’s lovely to know there are people around to help with questions,I feel very much alone at the moment although I’m sure it will have been the same for everyone who has gone through this process

[Goldyukr in reply to Hidden]

Yes I wouldn’t wish this process on anyone. But I have found these sites so helpful as the patients usually have so much insight. Doctors haven’t lived it.

[Jo-Goode Administrator]

An ECG, Echo-cardiogram or Cardiac MRI are tests that could carried out when a patient is diagnosed/suspected with Polymyosits or Dermatomyositis, as Myositis can effect the heart; it is good they are being thorough with your care after so many years of you being messed around.

I had serious heart complications aged 25 when diagnosed with Dermatomyositis 25 years ago, but the heart issues resolved with the treatment for Myositis.

Myositis UK had two cardiologists speak at the patient conference this year for the first time and they spoke about their current research at Kings College Hospital.

[Hidden in reply to Jo-Goode]

Oh thank you so much.I really thought it was a mistake appointment.I haven’t met my 3rd neurologist yet so couldn’t understand where the heart test was coming from.Although I haven’t met him,I am very encouraged by the 2nd consultant who spoke very highly of him ,so I feel in good hands now.thanks again,It is lovely to realise your not on your own,

[Maggie7171]

Hi 341-j

Yes it can be frightening.

You'll need an MRI and a muscle biopsy. What were you're CK levels?.

To get a true diagnosis, do not go on any steroids yet

(Predisone, etc).

I was diagnosed with Polymyositis around March of this year. I'm tapering down predisone from 60mg down to 10mg and will slowly continue down.

I'm on another drug for life

Azathioprine 150mg.

I'm better, but lots of fatigue, but can get out of a car, a chair sitting up better in bed.....Hang in....

[Hidden in reply to Maggie7171]

Thankyou so much for your reply.my ck level was only 289 but that apparently was higher than an earlier test. Consult said that doesn’t mean I don’t have polymyositis just that it would have been a good pointer if it had been higher.I don’t feel I am as bad as most that I read on here.My legs are so weak I can’t stand very well without wobbling into something.I can walk 100yds with aids and although the fatigue was dreadful ,unless I have to try and move a bit quicker ie crossing traffic I don’t feel too bad .if I am put under pressure the exhaustion and breathlessness gets me within a few yds.my arms are now joining in,trying to open and shut doors is hard,and the muscles at my lower back are causing me a lot pain.especially as they stiffen in bed.getting out to the loo is dreadful.(could that be degenerative disc trouble as 1st consultant said . )However I do feel lucky.I had this in my 40’s ,diagnosed then as ME which was the in thing then.It lasted just over 2yrs and then disappeared Just leaving me with some symptoms that I managed to work round.I have successfully ran a business and I am now in my 70’s when it has struck again.I feel really sorry for young people who are suffering it.must be aweful for them .At my age I can accept being disabled in fact I am more worried about the treatment now if polymyositis is what I have. Once took 20grm steroids for just 2weeks and never slept the whole time .aweful watching the clock go round.but at least when I get the diagnosis I can make an informed choice whether to treat it or not.perhaps at my age it could be better to live with it.thanks again for your encouragement.Its certainly been a long saga,and to think I was terrified of doctors at the start,I think I’m over that now although I might throw a wobbly on the first appointment with consultant 3.

[Maggie7171 in reply to Hidden]

No you have to treat it, if untreated could even lead to death.

Very low ck's, but still above normal.

Yes the insomnia can be bad at a high mg level. I would just read until I fell back to sleep.

70's is not old, you deserve a good quality of life.

You can buy a commode for the toilet which sits higher over the toilet. I still use it just in case. When this first started, I couldn't get off the toilet (I live in California, we say toilet lol).

I think your lower back is not part of Polymyositis.

The muscles involved are your core muscles front and back, thighs, upper arms and neck.

When are you going for more tests?

[Hidden in reply to Maggie7171]

Hi Maggie just got called in for the echocardiogram but it’s now wait time. Our NHS moves slowly.we can’t rush it

[Maggie7171]

Well that's not typically the first test, but different country. I would try and push them for an MRI. That will show muscle inflammation. Be demanding...

[Hidden in reply to Maggie7171]

Hi Maggie.Turns our the heart test was a check up from a problem few years ago.at least I think it was ,result ok.repeat test 2yrs .not sure what suddenly instigated that though.At the moment I am waiting for 3consultant to get in touch.I like the -be demanding words-getting to the consultant could take 4months.however your advice has helped me.you said back problem was not polymyositis so I started thinking,come to the conclusion it’s caused with the way I walk with the crutches.so trying to stand straighter instead of arched. and I didn’t know the disease could be life threatening,just thought it was a nuisance disease. so thanks for that .it will concentrate my mind when I get to treatment stage.I will patiently wait now for the next appointment to come.Unfortunately we have too many people in the country and not enough doctors.they must be under tremendous pressure.

[Maggie7171 in reply to Hidden]

Was the heart test ok? Whoever ordered that test couldn't they order an MRI? The sooner you start treatment the better.

[Hidden in reply to Maggie7171]

Hi Maggie,apparently when I first took I’ll ,4yrs ago they found I had an aorta stenosis.I didn’t know that.apparently the neurologist saw that and asked for a heart check first.Its ok though,has got no worse and I am now down for yearly checks .I am now waiting for appointment to see the neurologist.this could be a long wait unless someone takes pity on me.I am having problems struggling with controlling waterworks,when I want to go ,it’s move quickly or get a leak.bending down can cause a leak .do you know if this could be connected to polymyositis,if not it must be old age.

[Maggie7171 in reply to Hidden]

Hi 341j,

Glad to hear your heart is ok.

No bladder is not affected by Polymyositis.

I'm so sorry you have to wait so long. Keep bugging them

[Rabbitygal]

I am told that urinary incontinence is not part of my Dermatomyositis but I have suffered since I was put on all this medication. It has got a bit better since my dosage has dropped BUT I am convinced it is linked. Ask your consultant next time you go and they may be able to help, even if it is only a little x

[Hidden in reply to Rabbitygal]

Thank you for that information.I did end up having to go to the GP,things got so bad and she did say there could be a link ,but then found I had some blood in the sample so I’m in the middle of tests for that. so I am living with the difficulties.In. the meantime I wait for the neurologist appointment.I think there is a link though somewhere,it can’t be coincidence