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Old 10-30-2008, 12:36 PM   #1
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Pumpkinsmommy HB User
Polymyositis or what?

Hi!

After almost a year of many many tests, I have finally been diagnosed with lupus. However, I'm not totally convinced that its just lupus. I am now on prednisone and Plaquenil. My legs feel a lot better, that's the only change I see. I never had the joint pain that is commonly associated with lupus. The blood work came back positive for lupus. I have issues with my neck. My neck feels like it cannot support my head. It is so heavy, I feel as though I will pass out. I went back to my rheumy and she "tested" my neck strength and she said it is fine. The tests for polymyositis came back negative as well. My neck feels so soft to me. So do my legs. I'm a 43 year old woman who used to work out 4 days a week, pretty intensely. My world came to a screeching hault last November when I began to experience fatigue, dizziness and a whole slew of other symptoms. Also, my back hurts. The only way that I can describe it is that I can feel my spine. Its worse when I sit down. Lying down I am the picture of health, virtually symptom free. But when I stand and began to move around, after about 15 minutes, my head feels like a bowling ball. At one point, the bottom of my feet hurt so bad, it felt as though I were walking on bone. The prednisone is helping with that. I don't really deal with that anymore.

My question is to those of you who have been diagnosed with PM, do you have neck and back issues? I've been doing stretching exercises to strengthen the muscles in my back and neck. Also, my throat is so sore! I don't have trouble swallowing, its just really sore. Any feedback would be greatly appreciated...

Oh, I forgot to mention that I also have arthritis in my cervical spine as well as 2 bulging discs. When I had the MRI months ago, I had no neck issues. My neck issues started about 2 months ago. Its like pulling teeth go get the insurance company to pay for another one right now...

Thanks,

 
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Old 11-02-2008, 11:57 PM   #2
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Re: Polymyositis or what?

Hi .. I just read your post from three days ago about PM. I was dx'd with PM in 2003 after a high CPK. I was put on high dose prenisone for many months and then put on reducing doses. I lost so much muscle mass, especially in my legs, that they looked like sticks, and I had always had thick-looking muscles, especially my thighs. The symptoms went away after two years and I gained the muscle mass back (except my facial muscles - have very sunken cheeks and eyes), but the symptoms are returning. I just had a visit with my rheumy and haven't gotten the result back on the repeat CPK. I don't want to go back on the steroids again - they caused me to have a personality change, almost to a rage state.

To answer your question about neck and back pain - yes, I've had the same feeling as you've had about your head not feeling supported by your neck. I also have disk problems (2 herniated at C4-C5, 2 compressed vertebral fractures T8-9 from osteoporosis from the prednisone, and bulging lower lumbar disks) so I have a lot of back pain too. The doctor could never say why my head felt that way, but I get that feeling off and on even now. I fear its a problem with the first two cervical vertebra (C1 the 'atlas which holds up the shull, and C2 the 'axis' which helps the neck turn - the doc explained that to me and it made visual sense to me), but MRIs never showed anythimg wrong. But it sure is the weirdest feeling when my head just falls forward or to the side and I have to actually hold it in my hands sometimes, especially if I'm reading.

I take high doses of opiod medication because of a facial neuralgia due to damage to the 5th cranial nerve (trigeminal nerve) during a botched root canal in 1999. I also have scleroderma with some of it's 'sister' syndromes such as polymyositis which all play havoc with my facial pain. Autoimmune disease is so misunderstood and your dx of lupus is like me having the scleroderma.

Well I sure hope the prednisone and the Plaquenil are helpful to you. I hear Plaquenil is a good medication; my sister is on it for a presumptive dx of lupus. Good luck with the prednisone, hope it doesn't give you any back side effects like I had. And I hope you find answers ... if you figure out why your head feels like flopping sometimes, will you tell me? Thanks.
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Old 11-03-2008, 04:10 PM   #3
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Pumpkinsmommy HB User
Re: Polymyositis or what?

Thank you for your reply. I have an appointment with my neurologist on Wednesday, so hopefully he can offer more answers. These autoimmune disorders are just awful. I'll keep you posted if I find any answers to my bobbling head...

 
Old 11-25-2008, 12:43 PM   #4
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najave HB User
Re: Polymyositis or what?

Hi Pumpkinsmommy. Have you had any more news yet ? I just read your post and I do recognize a lot of things. I have dermatomyositis but this was only confirmed after a muscle and a skin biopsy. My blood tests didn't all come out obvious, tho my CK levels were elevated at first, there was a few other stuff that came out abnormal, which, before the biopsies, lead to believe I had an overlap syndrome, a little bit of a mixture of some auto immune diseases, and I still might after all. Then even before the treatment was started, my CK levels went down back to normal all of a sudden, if my blood would have been tested then, no one would have thought of Myositis in the first place. I used to have neck issues too, like my head was too heavy, at some point I couldn't even turn my head. I particularly had aching wrist joints, which got better just days after I was started on the Prednisone. The fatigue, the dizziness, the sore throat (more like a very dry throat and I get short relief when I have ice cold drinks) and sometimes my voice goes away. I recognize it all. I'm curious to know if you got some more answers by now. Keep us posted if you have time...

 
Old 11-28-2008, 07:32 AM   #5
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Pumpkinsmommy HB User
Re: Polymyositis or what?

Hi Najave,

Thanks for asking, still no answers. I saw an ENT two weeks ago. We did tests to determine if my dizziness is a result of inner ear issues. Its not. I had an EMG done on Wednesday. I should have the results soon. So, I'm still having issues, still have no answers, still struggling. This cracking sound in my neck is driving me crazy! I can barely turn my head. I'm miserable, but what can I do? I have to keep trucking along until I get some answers. We're trying to wait until January to do another MRI of my cervical spine as well as of my thoracic spine. My insurance company is giving me grief right now. So, hopefully soon and very soon, I will have some answers. I'll keep you posted and thanks again for asking.

 
Old 11-28-2008, 11:35 AM   #6
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najave HB User
Re: Polymyositis or what?

Sorry you are still waiting. I hope you get some answers soon, the wait is at least as tough to bear as being sick itself. I just got my new blood test results back now and once again, my white blood cells are up and double of what they should be, while a month ago they were normal but I've had this before so I tend to worry less by now. I had a flare-up of the myositis but the CK levels are still down. This illness is so hard to follow. That's the worst part with auto immune diseases. I'm seeing my rheumatologist next Wed. I hope to continue to decrease the prednisone, because frankly, it's doing strange things to my body. I haven't had a period since I started on it, and my face is swollen like a balloon, I've had remarks and questions from co-workers. I try to keep my work and my illness separated, tho some people know about it at work. I sweat like a pig and people wonder how I can be so hot when it's winter !! I can't afford to stay home, so I'm working full time, and I'm ever so thankful at least I have full insurance. I was young and healthy and reluctant when I signed up for the full coverage but it's ever so useful now !! Good luck girl I hope something comes out of your new tests !!

 
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