Polymyositis & Dermatomyositis Support Group

Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.

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imbecky 01/20/2015

Went to neuro today. He hasn't heard of anti jo-1. But he said he'd look it up. He also said that his assistant said it was not a specific antibody. He feels quite certain I don't have pm because of my ck levels. I wasn't totally shocked because after reading about everyone's experiences I knew this could happen. He said that sometimes athletes' muscles can get like this. Funny because I'm not an athlete, but I was a runner.I haven't ran much since April. I haven't ran at all in the past 3 weeks, not even vigorous walking because it just makes me too tired. So surely my muscles would be getting better by now.

He prescribed baclofen every 8 hours. I do not want to take this because I don't see how this will help weakness and I don't want to get hooked on something I don't need. He had another doctor who specializes in muscles come in and perform several strength tests on my arms and legs. It didn't go well. My hands work fine; although they are sore. My arms couldn't do much of anything and my legs actually went into spasms while I was pushing against her hands. She was concerned about proximal weakness.

I go back next week for some type of test with needles that they stick in my muscles. Both doctors will be there for this. Not sure what to expect there. Still waiting to hear from the specialist in St. Louis. Just want to lay down and cry. Maybe he's right. In which case, I wish we could plan for getting strength back rather than just treating spasms.

nanny1611 01/20/2015

You're probably going to have an EMG/Nerve Conduction Test. Many of us have had this done. These tests can show doctors several things. It was how they ruled out MS and ALS for me, and showed the doctors that I had "Idiopathic Inflammatory Myopathy" which supported my neuro's suspicion of PM. Glad the doctors are going to do research and are going to run these tests. Best wishes to you, and keep us informed.

autumm 01/21/2015

Hi Imbecky. I am sorry to read your post. JO-1 is a Myositis specific antibody. My Rheumatologist is at the top teaching hospital here in London and is also head of his department. Is it possible for you to get to John's Hopkins. How long does it take to get an appointment there. I had very little weakness with Anti Jo which is why my diagnosis took a while. They did at least find you also had proximal weakness so bells should be ringing somewhere. I sincerely hope you hear from St Louis soon. Thinking of you. Autumm

trpt1 01/21/2015

Hi imbecky, Do see a rheumatologist familiar with myositis. A rheumy will run blood work and will be familiar with autoantibodies. Here is a definite - Myositis does not just go away. Many people start DM/PM with inconclusive results, but over time the disease will become more obvious. The doctor(s) will not be able to deny an eventual flare over time too.

When I look for a doctor, I pull up the doctor's profile. I will look at years experience in medicine, location of practice, familiarity with myositis, patient reviews. I hand picked all my specialists - rheumatologist, neurologist, gastroenterologist, nephrologist (kidney), cardiologist, pulmonologist. ALL of my doctors are totally familiar with DM/PM and this makes a big difference. I care that each doctor knows DM/PM in their specific specialties, and can make the right calls on this disease.

I hope this helps.

trpt1 01/21/2015

Hi imbecky, I thought this video would be a great help. It is close to an hour so make popcorn. Dr. Tamiko Katsumoto MD discusses Sjogren's, DM/PM, ILD, RA, Lupus, Thyroid Disease with the diagnostic criteria/requirements for a diagnosis. She also discusses the autoantibodies and medications for each disease. I think you will find this most helpful. You can pull the video up by title if it does not come up here:

Overlapping Conditions in Systemic Sclerosis - You Tube www.youtube.com/watch?v=3NFlz6U7zBY

There is a lot to learn. Best Wishes.

lexisgirl 01/22/2015

Your doctor is not the right doctor. You need to see someone else. That doesn't mean you can't have your EMG. It will tell them something is wrong and maybe they will take you seriously from there. Find another doctor. Call your insurance and explain you need to see a muscle specialist that treats Myositis. If you can get to a specialty clinic like Johns Hopkins, do that although I can say it is really tough to get an appointment and you need a doctor's referral. Well worth it though if you can swing it. I am going and paying out of pocket. My insurance won't cover it.

Hang in there.

imbecky 01/23/2015

Thanks for the comments. My emotions have been wild. On the one hand I actually have felt better this week. So this makes me question if I'm really sick or if my muscles are just strangely wasting. But then when I am not feeling well, it's just so bad. There is definite hamstring weakness. When trying to do the strength test for the muscle specialist at the neuro's office, my legs went into spasms and I could not even lift my legs up for the test. My arms do not work at all when I lift them straight in front of me. It really is odd because it seems like it is just a select few muscles that are causing all the issues.

I looked up the blood work he ordered. It was all for myasthenia gravis. Who knows???? I couldn't find any correlation between this and anti jo-1 on the web.

I go to Dr. Pestronk in St. Louis in the middle of March. He is one of the doctors on the myositis website. So I feel that whatever he tells me I will have to trust.

I appreciate this group so much. However, it looks like there's no way to avoid the same long road that so many have traveled for diagnosis. Apparently without high ck, pm isn't a consideration.

nanny1611 01/23/2015

Has your doctor run a check on your vitamin D level? Many of us were vitamin D deficient at the times of our diagnoses. The orthopedic surgeon whole talked to me about vitamin D deficiency also told me to take magnesium. Apparently calcium contracts muscles and magnesium relaxes muscles. He said that vitamin D, calcium, and magnesium all work together and must be in the right ratio/balance. Deficiencies in either vitamin D or magnesium can cause muscle spasms too. He also told me never to take more than 400-600 mg.of calcium per day, because the body can't process more than that. He added that excess calcium can cause kidney stones too. Also, he said to count the amount of calcium consumed in milk and food within that 400-600 mg.

imbecky 01/23/2015

Oddly all of my vitamins are good. As a matter of fact the neuro specifically mentioned that my vitamin d surprised him because it was very good. Potassium was high, but other than that and anti jo-1 everything was in the correct range.

autumm 01/24/2015

Hi Becky. I am delighted you finally have an appointment with a Rheumatologist. A good Rheumatologist knows about Myositis specific auto antibodies and he also knows that the CK level can be normal for some time. Do read the live discussions over on the TMA site. Tap on Community and you wil get into them. Soon be March. Best wishes. Autumm

trpt1 01/24/2015

Hi imbecky, Myasthenia Gravis is a common overlapping condition with Dermatomyositis. Anti-Jo-1 can be found in Dermatomyositis too. DM will often have an above normal CPK at the beginning of disease, which for some people might not be very high. In later flares for DM, the liver enzymes will elevate, but not always does the CPK raise. Keep in mind that each person can be different.

I know that your doctors will figure out what is happening. Best Wishes.

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