Do you ever go to the doctor and get the “strength” tests where they push and pull a bit on your arms and legs and you have to push/pull against them?
My Rheumy always says “good! Good!” “Strengths not bad.” Really??? Because I can’t blow dry my hair in one sitting and don’t even get me started on grocery shopping or chores. It’s very confusing. Although I used to go to another rhuemy he suggested when he was out of options and when doc #1 would say “good, good” the newer, U of M doc would say “not so good” still a lot of weakness. Now I don’t see U of M doc because my CPK is normal and the doc is far away. But the weakness hasn’t changed I just feel like my primary rhuemy rushes through (I must note he is the best in town and well respected).
I know CPK doesn’t always determine how we feel, why don’t the doctors know this? Don’t look at my chart but not listen to me. He also never remembers that he took me off of prednisone. The last 3 visits he was surprised I wasn’t on it…,he has his computer right in front of him…maybe I’m missing something.
Ugh!! This is always the most frustrating thing for me! I tell my Rheumatologist every time, "Look, this might be "good" for someone else, but it's not good for me!" My doctor is always remembering certain things, but sometimes forgets other things. To me, your best bet is to document everything, and keep all your records and lab results in a binder and haul it around with you. That is how I keep everyone in line (including myself because I can't remember anything anymore, either).
I totally did the same thing until I was trying to explain something a few appointments ago and realized that I had no idea what I was talking about... LOL
i wish they could get and keep my cpk in the normal range. mine hasnt been normal in years, rhuemy told me last year she might never be able to get it normal...ugh im taking imuran and methotrexate, still have muscle pain and weakness as always.......started choking a few weeks ago, had an episode so bad the next day my chest hurt so bad. better now tho.
im sorry but the drs i used to work for before going on disability, always knew when they entered a room, what meds the pt was taking, as does my family doc. i just wonder tho about some of these drs?????
Hello, all--This is my first post on this website. Had weaknes and fatige for over three years and wasn't diagnosed (by primary care doc) with Polymyositis until recently, when CPK went over 1400. What has worked for you in reducing it?
In terms of communicating with others who share this disorder, how do I know if someone has replied? Am I notified with an e-mail? Confused also about not having to log in. Is there a way to read others' profiles? Hoping to "learn the ropes" quickly:)
For me, the only thing that has reduced my inflammation and CPK is the Methotrexate that I take. I have also found that eating "cleaner" helps me feel a lot better.
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Hope this info helps! Maren
Nell said:
Hello, all--This is my first post on this website. Had weaknes and fatige for over three years and wasn't diagnosed (by primary care doc) with Polymyositis until recently, when CPK went over 1400. What has worked for you in reducing it?
In terms of communicating with others who share this disorder, how do I know if someone has replied? Am I notified with an e-mail? Confused also about not having to log in. Is there a way to read others' profiles? Hoping to "learn the ropes" quickly:)
I’m sorry you’ve been choking Wendy, that’s very scary. Any word on a swallow test or something?
In the past with other docs, even if they weren’t my favorite, they still knew what meds I was taking, so I’m glad that’s not a huge expectation on my part. I feel like he’s just not into it anymore. And he’s the best in the area.
wendy krauss said:
i wish they could get and keep my cpk in the normal range. mine hasnt been normal in years, rhuemy told me last year she might never be able to get it normal...ugh im taking imuran and methotrexate, still have muscle pain and weakness as always.......started choking a few weeks ago, had an episode so bad the next day my chest hurt so bad. better now tho.
im sorry but the drs i used to work for before going on disability, always knew when they entered a room, what meds the pt was taking, as does my family doc. i just wonder tho about some of these drs?????
Nicole, I’ve got a follow up visit the end of jan with my drs, I’m going to address the choking and stumbling then, in hopes its gone. It isn’t too bad, but let me tell you when it happens it scares the crap out of you. I knew what was going on, thank goodness and I kept telling myself to remain calm, don’t panic. It worked.
Hello, all--This is my first post on this website. Had weaknes and fatige for over three years and wasn't diagnosed (by primary care doc) with Polymyositis until recently, when CPK went over 1400. What has worked for you in reducing it?
In terms of communicating with others who share this disorder, how do I know if someone has replied? Am I notified with an e-mail? Confused also about not having to log in. Is there a way to read others' profiles? Hoping to "learn the ropes" quickly:)
Sometimes you are weaker than you think. My doc gave me all the muscle tests, mostly said good except for a few. He then gave me the hand squeezing dynometer test --his scores were 40 and 41, I thought my hand strength was pretty good--open bottles, tightening things, etc.--my scores were 12 and 9 !. I am 77, IBM (myositis) for a couple of years and take 12.5 mg of mesotrextrate once a week. Walk a mile a day and climb stairs, haven't fallen in 18 months.
Be careful bob walking climbing stairs,your right sometimes we think we have this under control only to find out that just maybe it isn’t as good as we thought. It’s scary at times. The choking thing bout scared me to death. I’ve also started having some balance issues at times. Oh well it will all work out one way or the other, right everyone…