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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brendacaytonwhite 07/27/2013

I know that we have probably discussed this matter before, but I need to brig it up again. The main problem with memory loss is not remembering things such as how to spell words. I am tapering my Prednisone, but the mental confusion and loss is getting worst and it happens so often that it feels like I am lossing more daily. It is so bad now, that while my daughter is talking to me, standing straight in front of me with no one else in the room, I do not hear or understand what she is saying and ask her to repeat it sometimes more than once. i can never remember what someone says to me and am writing things down more and more. I was told months ago that the memory loss/confusion was probably due to the Prednisone after I was given expensive tests to determine that it wasn't due to a genetic disorder. Prednisone is currently the only medication that I was taken at that time. I no longer take Cellcept. I am taking Lyrica instaed of Gabapentin, which I was taking then. I also stopped using Nutrasweet, so there has to be something else causing my disorder. I use to be a true reader. I could finish a book in one night if it was truly interesting. The libarary was my favorite place to visit and I always had a few books on hold. This disorder is really affecting my spelling. I was thinking of the word visit, but wrote the word finish instead.. My coworker and I email each other all day long. We are home based and that is the only way that we can communicate with each other other than by phn and it takes me so long to reply to her because of the misspellings and incorrect words that I type. It is one thing to have spell check, but that doesn't help when the word is spelled correctly, but it is not the correct word. Sometimes the correction will notice that I am using an incorrect word for the sentence but not always. I use to type over 100 words per minute and I am now down to a little over 30 per minute. It is frustating when I can't remember simple 3 or 4 letter words. I have to visualize it to be able to spell sometimes. And to think that I have over $75,000 in student loans that I am paying back and I am not smarter than a fifth grader...lol I need some input that I am not the only one with this problem.

Krissytin 07/29/2013

No, no you're not. I feel like im losing my mind like I am an older lady dealing with on and off alzheimers. Its frustrating, especially at work. Guest will be talking to me and sometimes I have to have them repeat what they said to me. And when I get a manager to assist a problem, I tend to froget what the issue was or what the guest name was. Ive been missplacing objects, I forget what I was talking about in mid sentence, forgetting certain events and doctor visits. I have started to record things that I need to do on my phone. Right when I know there is something I have to do, it gets recorded right then and there and set up as a reminder. Yeah..I hate this. :-\

trpt1 07/30/2013

Hi Brenda, I think doctors do know that DM/PM effects the brain. No one ever receives a diagnosis of something until it is full blown.

I am dealing with stomach and liver issues. I have ear pain. I found an interesting article that shows how stomach issues can effect the ear, nose and throat. You can google this title and it is a fascinating article:

Ear-nose-throat manifestations in Inflammatory Bowel Disease by C.D. Zois, K.H. Katsanos, E.V. Tsianos www.annalgastro.gr/index.php/annalsgastro/article/download/621/466

I found this interesting article which mentions DM/PM. You can read more about the autoantibodies like Hu and Yo. An interesting article is: Paraneoplastic Neurologic Disease by Kurt A. Jaeckle.

I see the neurologist tomorrow. I already have much to discuss. My issues are in short and long term memory.

deleted_user 07/30/2013

I have really bad memory problems. I have trouble forming words, thinking of a sentence to get my point across, and writing on paper. Not only do I have a hard time thinking of the words, I have a hard time speaking. I have some speech issues where my mouth and tongue just do not want to move quickly so I can speak. It's like I have a lazy mouth.

My memory has become so bad that I need tasks broken down one by one, so I can get them complete. I would be totally lost if I didn't have notes on my iPhone as well as my calendar. I forget where my keys are, where I put my shoes, my makeup. I do things without even realizing it. My husband did not understand what was wrong with me, but I explained that this disease does affect the brain. I used to be so articulate.

autumm 07/31/2013

Hi all. I had problems with memory and speech on high doses of Steriod. I used to call it. 'Steriod brain fog' As I taper the dose it gets better. Autumm

nanny1611 07/31/2013

Even though I've been off prednisone for 2 years, my good mind has not fully returned. And when my inflammation goes up, my cognitive abilities decline. My mental processing time is slow, and causes delays in responding to questions, etc. It's frustrating!

bny806 07/31/2013

i have this problem too.. and it always correlates with my muscle weakness.. I feel like I have dementia (and I'm only 33).. I won't be able to remember a password or code that I use every single day.. it also is WAY worse with hormones (premenstral), but my muscle weakness and all my symptoms are worse at that time too.. it's awful! (i'm not on steriods, just ivig)

trpt1 08/01/2013

I have an MRI scheduled for August 14th. I am trying to find out why my ears feel like they are melting. The pain begins in the right ear and eventually goes to the left ear. My hearing is excellent, but the pain is a concern. I also get blurry vision. I have a non-stop mild dizziness. I wonder if it is the beginning of brain inflammation. My stomach tests came back normal, so it is not a stomach problem causing the ear pain.

I totally sympathize with everyone here, and I can totally relate to these issues.

autumm 08/01/2013

Hi Trpt. I am so pleased for you that your tummy is ok. I too have the ear to ear thing. I just dismiss it as part of all this. I had an MRI and CT scan eight months ago as part of the Myositis work up protocol. Hope all goes well for you. Please keep us posted. Autumm

brendacaytonwhite 08/01/2013

BWAT0615. I feel as if you explained me alot better than I explained me. I am sick of feeling like a fool. I had to get off the phones at work and have to redo everything to make sure it is done correct. This is why I stopped driving a year ago and now I cry because I have lost all my freedoms and can't get them back because I am worst instead of better. I think that my mine is getting worst due to the high dosage of Opana that I am taking for my pain. My daughter told me that I have talked in my sleep as long as I have been on Predinose, but she and my grandson who is staying with us for the summer state that I do it more now with the Opana. It is so embarrassing trying to have a normal conversation with another person and forgetting what we were talking about. I love to read and can't complete a paragraph anymore.

autumm 08/02/2013

Hi Brenda. Your pain Meds can do that to you. I know you are fed up with doctors but is there any way they can evaluate your pain and maybe try something different. This is just a shot in the dark but have you ever tried a Tens Machine for pain. Its just small and fit on a belt round your waist. Autumm

angie1026 08/02/2013

BWAT described all of my issues very accurately as well. I just asked my rheumy about this two weeks ago and she said it doesn't have anything to do with my DM. I'm not buying that. I never had memory issues before at all. It's very frustrating.

brendacaytonwhite 08/03/2013

Hi Autumn. I have tried various other pain meds and even the patch which kept falling off. Nothing has given me any relief unti I started on the opana and of course must have the high dosage. As much as I wish the pain would go away, I can handle it if I have no choice with the Opana, but this memory loss and confusion is about more than I can deal with. It makes me feel dumb, which I am not and I have to constantly retype words, not so much as for miss spelling as for the wrong word being used. I will think one word and type another. I was in a conversation with someone who was having the IVIG for a different illness and totally forgot what we were talking about. It didn't help that he was a former teacher at my grandsons' high school. I truly HATE this illness. I am a brat a lot of times now, because I cry alot and complain and my daughter doesn't allow me to get in the frame of thinking and even though everything she says is true, I don't want to hear it I want her to agree with me that my life sucks and it is not the life that I ordered and have worked so hard for. I don't have material possessions and not even a savings account, other than my piggy bank that turns into my true saver when I need a dollar or two to carry me over like today. I could be doing so much more to improve my life if it were for this stupid illness, disease whatever is the correct term.

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