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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Trevor49 10/29/2015

Hi this is Trevor. I was admitted to the hospital October 22 and was had an EMG that showed myosotis I was worried about Als as my blood work is completely normal . I been getting weaker and weaker and losing my muscle tone. I did 5 days of Ivg therapy and that didn't help. My hands are shakening and getting weaker each day and my arms feel like they have weights on them and my legs are so heavy. The neuro two of them say it isn't als but this has progressed to that I'm in such a bad state. They say it is DM . But I'm constipated and can't swallow too well I m still at the hospital Today Oct 29 and they want to release tomorrow with higher dose of prednisone which I've been taking for 1 month or so. My eyes are so dry and I cough at night which keeps me up. I hope there is going to be a light at the end if this tunnel. I need a walker to walk and can't dress or shower myself. This isn't fun laying in hospital bed wondering what is going on. No one gas said als which is good only DM but I wonder because I said that that is what they assume but I did have a EMG 6 days and he said no als but I'm still very scared

Trevor

autumm 10/29/2015

Hi Trevor. It is so good to have news of you. I am so sorry you are not yet there. I am sure Als is ruled out now Trevor. DM can do all these things to you. Are they planning anymore IVIG and are they giving you anything like Imuran as well. Perhaps you could suggest they make contact with Myositis Rheumatologist at the Mayo in the US or at Kings College in London for some help with your treatment as they are clearly struggling with it. Ask them if they have run a Myositis blood panel and to tell you what autoantibodies you have. You WILL get there Trevor, pleased don't be scared. Best wishes as always. Autumm

Trevor49 10/29/2015

The Rheuy from the hospital is going yo do snogger muscle biosopy because she said my blood levels are normal. She wants to do a fill work up to see why my muscles are do week. Do I will be in the hospital for a bit until they determine the exact cause. This rheuy seems very good and knowledgable

Trevor

trpt1 10/29/2015

Hi Trevor, I had similar feelings at the beginning of my DM. It did take me about three months with the high doses of Prednisone and MTX before I saw some improvement. I had to learn a great deal of patience too. I asked other people for help as needed too. Be encouraged that things will get better but it does take time. Today, four years later, my DM is well under control and I am doing well. Be encouraged that the medications do work to help gain control over time. There is light at the end of the tunnel too.

Be careful to check your blood sugars on high doses of Prednisone. Talk to the doctor about diet on high doses of Prednisone.

Autumn is so correct about knowing your autoantibodies. The autoantibody information will let you know what to expect with DM.

Best Wishes.

Trevor49 10/29/2015

sammyw 10/29/2015

Hi Trevor. I know it is scary being in such a state. I was where you are..admitted to hospital, hardly able to walk, unable to wash or dress myself and only able to swallow pureed food. My arms and legs felt like cement. I had the IVG which didn't seem to help. It feels like a bad dream but after a while the meds really do start working and you will gradually get back to your old self. Take comfort in the fact that a lot of us have been there and there is light at the end of the tunnel. Hang in there and take one day at a time.

autumm 10/30/2015

Dear Trevor. Happy to read your ost today and to know your new Eheumatologist knows what he is doing. A full work up is really important. Not sure what the biopsy will show as you have had lots of steriod but I had an MRI of my lower legs which showed the inflammation, I know I keep on about the blood work but the autoantibodies show the disease pathway and point to the best treatment plan for you. This disease needs lots of patience and the right meds. I have you in my thoughts and prayers Trevor. Everyone here will be with you all the way and wish you well. Don't be scared, you are in a safe place. If you have the time go to the TMA Myositis site and look for the name Bill Simeral and read his story. He was in a worse state than you and recovered and has been in remission for some years now. They will get to the bottom of what works for you Trevor, if not IVIG then they still have some big guns in the Pgarmacy. Best wishes as always. Autumm

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