Myositis UK

Yes, it's possible to have normal lab results and have Myositis...

Yes, it's possible to have normal lab results and have Myositis...

Yes, it's possible to have normal lab results and have Myositis...

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Yes, i was told by a rheumatologist in February that my neurologist was wrong and I don’t have myositis because my labs don’t support it. So I brought this up to my neurologist and he was pretty upset. He then listed all the evidence he had to support the diagnosis. Needless to say, I didn’t go back to that rheumatologist. It seems to me if a doctor says that, he is obviously not well versed enough in the disease to even try to treat us.

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I have a positive Mi-2 and and MRI confirmed inflammation. My CK levels are normal which they seem to put a lot of emphasis on what does this mean? Also how do I find out which one I have? I’m going to ask my Rhuemy on Thursday at my next appt

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Mi2 antibody is generally associated with Dermatomyositis. An increase in CK levels are an indicator of muscle damage.

I have had obvious muscle/skin flares with no CK rise and doctor has treated my symptoms , not lab results. But also had a rise in CK and felt fine!

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My muscles really hurt and I’m struggling holding my head up on bad days. It particularly affects my left side. And I have painful finger joints symmetrical in both hands. Weird but I don’t have any skin issues? I wonder if it’s IBM as looking back I think I’ve had it a few years but it’s getting a lot worse recently and I think it triggered my hashimotos I’m so confused but want to know what I have. IBM progresses slowly, has low CK levels and affects one side more than the other. Any ideas Jo? X

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Hi missfg

What was the evidence your neurologist had collected? My neurologist has ruled out inflammatory myositis based on normal ck except once was 750 (hadn't exercised at least 5-6 days before that test and not much exercise either) then a week later it was 45 so normal again, not tested since. normal CRP and esr . Now he's thinking some other type of myopathy so getting EMG and I think nerve conduction tests. But he also felt all my other symptoms pointed to possible connective tissue disease and was more appropriate for rheumy not neuro, but doesn't think it is Ehlers Danlos either. I have seen 2 rheumy a who referred me to neuro when my bloods weren't interesting enough, so going to third rheumy next Fri. Nothing like being shoved pillar to post.

I am wondering if I have sjogren's syndrome with associated mild myositis.

Thanks,

J

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Hi I’ve not seen a neurologist as I think they usually deal with IBM not poly or derma. I’m just under a rheumatologist. But I have focal myosotis which I understand is very rare but I’m showing signs of improving on my recent MRI. My bloods for CK levels have always been within range so they’ve treated me on my symptoms and MRI’s. My EMG and nervous conductor tests didn’t show anything as the needles weren’t placed in the muscles I had inflammation in as mine is focal if that makes sense.

I also have severe hashimotos which is making me quite sick. Dr Chinoy thinks it’s the hashimotos / infection that’s caused my focal myosotis.

We’re all very different so need to be treated on an individual basis based on our results but also just as important our symptoms.

I have muscle wastage and weakness but I slowly improving. But there is a much better prognosis for focal myosotis than other myopathy’s

Hope this helps x

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Hi missfg

Wow aren't you interesting for your doctor! But I am sure it isn't much fun for you. I had never heard of focal myositis so I appreciate you sharing your story thank you.

Did you have raised ESR or CRP levels showing systemic inflammation? You may have anyway with Hashimoto's so maybe it is hard to tell re inflammation and your myositis which is causing it.

All these conditions are so confusing.

I am a bit concerned no MRI of my muscles is being done first and my muscles will be randomly tested. But the neuro did say he is taking one step at a time and can refer me to a specialist clinic. I might ask the new rheumy about this on Friday.

Thanks again, it was great to hear from you,

Cheers

Jar1973

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Haha let’s say I research everything so keeping them on their toes!

My levels were in range or I think they’d have put me on steroids. Which at the time I’d have snatched their arms off but glad I’ve not had to go down that route now.

I had the muscle and nerve conducting tests first it is a process of elimination. Which doesn’t help when your sick and want your life back!

Stay positive. Work with your doctors but be firm. Sometimes pestering them does help don’t just accept what they say. Insist they treat you. And look after yourself. Don’t push your body too much but keep as active as you can as it helps along with a good diet and rest when you need it. Avoid gluten and listen to your body good luck x

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Normally muscle weakness is symmetrical in Myositis, but since most of us a dominant side it might be you notice weakness more in one side than the other.

It's possible to have a type of non destructive arthritis when you have Myositis, for several years my hands were extremely painful and swollen.

The pattern of weakness is different in IBM to Polymyositis/Dermatomyositis; in IBM quads and forearms are particularly effected myositis.org.uk/Documents/I...

If your neck is effected it's more likely to be PM or DM myositis.org/learn-about-my...

myositis.org/learn-about-my...

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Hi everyone

I saw my new rheumy today and she was great. A few more bloods around cortisol or adrenal function, and MRI of quadriceps muscles with contrast to look at myopathies. Otherwise she suspects fibro even tho I have minimal pain.

She said fibro is just a possible provisional diagnosis to enable some treatment trials but all the meds suggested are for neuropathic pain, which I don't really have. Or at least not enough to warrant the side effects.

I may discuss a low dose naltrexone trial at my next appointment instead as it is much safer and helps both fibro and autoimmune conditions for a reasonable percentage of people.

So we will just have to wait and see the results of the next round of testing re myopathies! It's another step at least.

Thanks so much for listening.

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