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.

317 Members

2,891 Posts

0 Online

angelamichelle 07/17/2014

hey guys, havent posted in a while!!
well i have been med free for i think like 3 months now and i have been increasing my strength better then ever this last month!!
next week i am going to see a doc at the Cleveland clinic just for a second opinion/look over as requested by my normal nuero :) im excited i checked his profile and he specializes in DM, PM, and IBM!!! im hoping he has seen at least a few other cases !! ill let you guys know how it goes im just hoping he doesnt want to put me on anything cause i feel great but you never know!

trpt1 07/17/2014

Hi Angela, Congratulations for being free of meds!!! YEAH!!! You are doing great with a strong immune system. I am so glad that you are back to normal and marching forward.

I do believe in second opinions. A good doctor does not mind when patients seek another opinion. My gastroenterologist told me that sometimes doctors can get stuck on treatments when seeing the same people over time. He told me having a good GP or a second set of eyes can be helpful over time.

Best wishes for continued good health. Stay in touch and visit us too.

nanny1611 07/17/2014

Great news, Angela. Here's wishing you continued wellness. Let us know what transpires at the Cleveland Clinic.

amberhere 07/18/2014

Hi Angela - really good news and well done!! Fingers crossed you won't need to go on any meds and continue to do really well. Take care.

angelamichelle 07/29/2014

ok so i got my results back from the clinic.
CPk = 860 which is up from 710 in Feb.
Adasole or whatever is also high along with my ASL
i just faxed over my appt notes and test results to my reg neuro to review and now im waiting to see what he says.

now i know 860 is high but i feel SOO good its not reflecting that number at all IMO. my strength has been increasing so much lately!!! O.o
not the news that i was hoping for but not to bad i guess :p

lexisgirl 07/29/2014

I think this is great news you are off meds and feeling well. Many doctors don't treat based on labs. They treat based on how you feel. If you are strong and living a "normal" life, I would tend to think that should be your course of action.

Congratulations!

angelamichelle 07/29/2014

Thanks for the advise :) I haven't heard from my doc yet so that sounds promising ! And I joined a gym today so I can do more workouts safely using the machines and set my needed resistance :)
I did have one more question .
With the liver function the first doc at university hospitals told me it's not my liver it's my muscles and I should not see a specialist . Now the clinic is suggesting it could be a problem? I hate getting such different answers from highly rated doctors?!! Ugh

Join the Conversation