Maggie, I am glad to hear that you are in the hospital and getting some treatment. I will put in a prayer that you get good, correct treatment with the meds.

I hope that you will see some big improvement soon. I know that at least now a lot of people are looking at your situation. It is now up to getting the right meds and healing up. Try to stay relaxed and move forward from here.

Keep us posted.

Thank you my Dear Friends,I landed on my" Butt" pretty well ,this is by far the worst flare up i have had,as the Methotrexate is now increased to it's max,and prednisone given IV. My teeth are all so sore,skin,joints,muscles,you name it it's painful .haven't felt my toe's in day's.Why do I feel angry at myself? Could I have prevented this? The Dr's say because the pons in the brain and stem are involved it is wider spread .Gosh I'm SCARED!! I was diagnosed in March,so maybe it is only the beginning but my third flare unless I was never controlled yet.Has anyone ever felt like this could be the END?
Thank you for your reply's and enormous Support I might need you girls a little till I Pull through this.You are the only thing I have right now,Everyone around me is too scared to help me or talk,so I'm left well alone.Words can not explain my gratitude to you all.THANK YOU!!! Take Care Love Maggie

Hi Maggie. To mis quote Winston Churchill 'this is not the beginning nor the end but its the end of the beginning' of course we all felt terrible at the beginning and of course we never thought we would get better. This disease is scary when its bad. Maybe you have not had the right doctors or the right treatment until now. You will feel better but its a Marathon and not a Sprint. It took eight months of treatment before I turned the corner. Be the best advocate for yourself you can be, don't take any more rubbish from the medical team, there are good doctors even great ones, you will find the right one. Take one day at a time, slowly does it,you will get there. Don't do too much research on the Internet, it only drives you crazy and sends your imagination in all the wrong directions. Ask about what auto antibodies you have, it helps in managing this disease. We are thinking of you, Your are not alone now. Autumm

Maggie, so glad you are getting treatment. IV steroids can stop the damage pretty quickly with Myositis...
You may feel angry at yourself as you say from the steroids they can do wacky things to the brain... along with controling some of the inflamation. Some do go all the way to psychosis on them but many of us find them awful. We love to hate them and hate to love them all at the same time. if it gets too bad, do talk to the doctors. They can use oral Medrol next which is a bit different in the brain department, but still a steroid. dosing is a bit different but it gave my my mind back and prevented the crazies for me. I get a bit of a euphoric lift from it and i use that to my advantage...

Hang in there, i hope you are feeling better in a few more days.

Do you know about TMA and the facebook groups?? with TMA there is great info to learn from and with facebook groups you can find even bigger groups that are supportive more regularly many times a day when we need that... I can link you up if you need then names let me know... Do you have DM?? i have a study that is good to read when you are up to it. email me at
shawnanrn@gmail.com
my best to you, Shawna

Oh another symptom i know is doomsday for me is the magnetized to the couch or bed feeling. I want to do things, and i just never get up off the couch, body won't allow it...

Thank you Autumm,Thank you Shawna,Im slowly turning around again,Very tired ,but improvement is starting to glimmer ,showing itself in small appreciative doses.Thank you for your support and giving me hope,your replies were never before more needed,than at that time! still spending 99% in Bed,but Im a lot calmer,still can't feel my feet,but the gloom and doom has gone.Shawna I would like the contacts for Facebook please.
Thank you all ,finally the situation is not as grim as it was,but very slowly I can smile again.Best wishes to you all stay well Maggie

Hi Maggie. Great news you are feeling some improvement. You will get there, it takes a little time. Its hard to uplift your spirit at this stage. Hope you have now found a good rheumatologist although a good Neurologist would be just as good if there is experience with Myositis. Hope its not too long now before you leave the bed and can move about. Best wishes as always. Autumm

The Myositis "Ramblers" Keep in touch group is one of them closed private and you ask to join, and
DErmatomyositis and polymyositis patients group is another i am in.

Some of the DM/PM groups are open groups and i did not want that.
More frequent posts and hand holding. Some also q;uite ill complainers, but you get the good with the bad... and i appreciate all the great folks on them...

So glad you are starting to feel a bit different... give it time and eat all the fruit and vegetables you can. The more you fill up on good nutritious food, the less room for high calorie food that will up your glucose with all that steroid.

Sending you healing light and patience with yourself.
Shawna

So glad you are slowly feeling better, Maggie. I've been praying for you. These diseases are so difficult until you get the help and meds that you need. Take good care of yourself, and try to enjoy all the bed rest you're getting. It's good to hear that you are slowly regaining a smile. Best wishes for growing stronger each day.

Maggie 81, it is so scary and sad at the same time that you had to go through all that. We seem to be test subjects for doctors I don't expect them to know everything but to at least care to provide the right answers. I spent years and more money that I could afford trying to find out what was wrong with me. I am glad that you now have an answer and that the Prednisone helps. I am going up to higher doses of Predinose than I was on. I had gone from 50 mgs per day to 3 and I was miserable. It took my diabetes nurse to contact my Rheumy and advise him to elevate my dosage so that I could have a quality of life. The higher dosage does elevate my blood glucose but I adjust my insulin. I also have to get control of my eating. I hope that you feel better and know that we have a great support group who has been through it all.

Thank you my Dear Friends
,I can see a light at the end of the tunnel,with all your wonderful support and reassuring words I have come out of this dreadful time once again!! I'm now out of bed and pottering around the house.,still slow but definitely improving! THANK YOU TO YOU ALL!!!! BEST WISHES TO YOU ALL!
KIND REGARDS MAGGIE
P.S. I HAVE JOINED THE SUPPORT GROUPS SHAWNA HAS Suggested .

Great news you are moving in the right direction. Keep on going !!!! Autumm