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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jfreeze0 05/06/2011

My family doctor's office called me today and she needs to see me about some letter she rec'd from my neurologist. I don't know about what. I don't care to see this woman at all. She brings me back to a dark place. I was hospitalized last year for 7 months, during which time, well, frankly I nearly died a few times and I think I was going to languish there and die if my family hadn't of discharged me. Either she was ignorant or too arrogant to admit that she didn't know what was wrong with me - and she was in charge of my care as she had privileges at the hell hole of a hospital I was at. I asked repeatedly - my family asked repeatedly - for my specialist to be kept informed. I asked doctors, nurses - yeah yeah, we'll check into it. The nurses would call my family doctor and she would laugh them off. They're always calling about you because you're always throwing up. Maybe throwing up is your new normal. Do you know what that does to a person - telling them that throwing up 6 times a day - VIOLENTLY - while being tube fed in a way you're not even supposed to be able to throw up - is NORMAL??? And what the rest of your life will be like????

I can't stand the thought of going to see her. I've seen her twice since I was 'released'. I went straight to my specialist who figured me out within 2 weeks.

I gave up - I gave up on living. She brings me back to that dark place. I don't know if I can be her patient anymore. Certainly I don't trust her with my care - so how can she be my doctor anymore?

jfreeze0 05/12/2011

Thanks, but I think the cause of my vitamin deficiency has an easy root cause - starvation! I spent a year either not eating or throwing up - or not really eating and throwing up anyway - and being tube fed and throwing up anyways - I am surprised I'm not deficient in EVERY vitamin there is! My problems went away with prednisone because the disease got under control. I am now dosing down so of course I'm hopeful that things continue to 'work' properly and that the Cellcept will pick up where the prednisone leaves off.

I will let you guys know if the B12 takes care of the 'stinging' toe tips, cranky fingers/hands that don't work right, ears that ring when I chew, hearing that comes and goes and the oh-so-sensitive legs where I practically jump out of my skin when my cat jumps up on my lap! I am so HOPEFUL that it's just B12!

jfreeze0 05/12/2011

Oh, and I absolutely hate taking pills (my vitamins - calcium/vit d combos are chocolate coated so I'll take them) so I will look for those 'dots'. My doctor advised that the strips have a horrible after-taste so I'll be avoiding those.

deleted_user 05/13/2011

Hope the B-12 injections help.

Just a note about B-12 - I do my own B-12 injections that I order online - same stuff your doc has and much easier and cheaper to do it yourself if you don't mind the needle thing - I do other daily injections anyway.

Anyway, if you take a proton pump inhibitor such as Prilosec or similar, which a lot of people on steroids take, you can't help not develop a B-12 deficiency. B-12 defiency can cause serious neurological damage.

Turns out that you can have your entire stomach removed (theoretically) and still absorb all of your vitamins through your small and large bowel EXCEPT B-12, which has to be absorbed in the presence of stomach acid. If you are preventing the formation of stomach acid, you are also preventing the absorption of B-12.

(I keep medical textbooks by my bed for a little 'light reading' at night - had too many doctors almost kill me - and found this little fact very interesting.)

Of course, in your case, I would say malnutrition would definitely be a root cause. Hopefully, you can get on B-12 injections and be feeling better soon.

deb g

jfreeze0 05/13/2011

Thanks for the info. I'm Canadian so if I went to the doctor for B12 shots they would be free. :o) Buying the vitamins at the store will cost me money so maybe I'll decide that way (haha - not! I hate getting stuck with needles! I spent 7 months in the hospital with people poking me all the time).

I had to look up what a proton pump inhibitor is and I realize I do have one, but I hardly ever use it since I only had trouble with heartburn when I was on high-dose steroids. So now you've given me an even better excuse not to have taken it in quite some time (I was letting my husband take them for when he has heartburn because he gets it a lot more often than I do!).

So there you go - the malnutrition coupled with all of the medication I was prescribed to try to stop me from throwing up and keeping heartburn, etc at bay has caused this deficiency.

I love this site - you guys are so knowledgeable! Thank you!

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