Guest guest Posted October 4, 2001 Report Share Posted October 4, 2001 Lynn, Your doctor is wrong, wrong, wrong! There are many, even among this group, that have had muscle weakness with no elevation in CPK. 's CPK started out at 3700, after 2 I.V. solu-medrol infusions it was cut in 1/2. 2 weeks later is was cut in half again. had muscle weakness long after his CPK level was in the normal range. I am sure others will share this info. with you also. I think Vicki is one who's CPK has never really been that high. But, since she is probably lounging pool side in San Diego with a lot of our friends, drinking Pina Coladas, it will be a few days until we hear from her LOL. I am sorry he treated you so rudely. So aggrevating and uncalled for. Makes me angry. had an orthopedist that when I said that was always having hip pain, actually looked at him and started laughing. " Oh really " , he said and actually scoffed. His little resident standing there was shocked, as was I. had been " showing off " for him. Walking, running, doing all of the things the Dr. had requested. Any Dr. who works with children, and this was a juvenile orthopedist, should know that children will work through any pain in order to please, or to appear like any other child. He was a jerk and I reported him to 's Rheumy who was furious and promised to take care of it. I am so sorry that he treated you that way. Shame on him. Hugs, Cari > >Reply-To: OurMyositis >To: Myositis <OurMyositis > >Subject: My Day >Date: Wed, 3 Oct 2001 16:40:08 -0700 (PDT) > >Hi Everyone! > >I had a day all right! Still no DM diagnosis for >sure. >I spelled it today for the nurse, she >laughed and said " you can be one of us if you keep >this up! " LOL > >Had the skin biopsy today, 1 stitch in my fat arm (he >wouldn't scoop out any excess, durn it!) > > Irritated the rheumy...no tests to look out, he still >refuses to diagnose me even tho I fell again, and this >time, finally used the word " weak " several times in >referring to my symptoms! He said if my muscle >enzymes keep coming down, it's not DM!!! What do you >say to that??? > > I asked him if damaged muscles will improve - mind >you, I didn't say necrosis, and neither did he, but he >said yes, they will repair themselves. He was >irritated with me cause his nurse forgot to tell him I >was coming at 8:30, apparently his planning time. >When I explained I needed to get to the dermy miles >away, he said " well let's get you there. " Like that >was my fault! And Lord, he was talking so fast! Told >him about hair loss and itchy scalp, told me to tell >the dermy! Then when he said " what do you expect me >to do, " my eyes bugged out...and told him to give me a >referal for the EMG, well, that should come from my >primary care, but grudgingly he wrote out the request, >and more blood - Aldolase and full CK. You know, >this proves it - men get PMS, too! > >But my GP was my hero...she herself called and made an >appointment for me for tomorrow to get an EMG!!! >Yahoo...this ought to give a clearer picture and help >them decide if I need the muscle biopsy. > >Lynn > > >===== >*~*~*~*You can drown in your stream of consciousness. Make sure >the drain runs freely.~*~*~*~ > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2001 Report Share Posted October 4, 2001 Lynn, Cari is SO right! I have blood tests every three months, and even when the readings appear to be " normal " I know that something is going on. Now, my rheumy agrees (he has done some research on that subject) and tells me that the blood tests are not really that conclusive when it comes to seeing the evidence of flares with DM. He says he thinks doctors should listen to their patients about symptoms and flares. Thank goodness he feels that way. I hope the doctor you mentioned isn't going to be your on-going care-giver! Annette My Day >Date: Wed, 3 Oct 2001 16:40:08 -0700 (PDT) > >Hi Everyone! > >I had a day all right! Still no DM diagnosis for >sure. >I spelled it today for the nurse, she >laughed and said " you can be one of us if you keep >this up! " LOL > >Had the skin biopsy today, 1 stitch in my fat arm (he >wouldn't scoop out any excess, durn it!) > > Irritated the rheumy...no tests to look out, he still >refuses to diagnose me even tho I fell again, and this >time, finally used the word " weak " several times in >referring to my symptoms! He said if my muscle >enzymes keep coming down, it's not DM!!! What do you >say to that??? > > I asked him if damaged muscles will improve - mind >you, I didn't say necrosis, and neither did he, but he >said yes, they will repair themselves. He was >irritated with me cause his nurse forgot to tell him I >was coming at 8:30, apparently his planning time. >When I explained I needed to get to the dermy miles >away, he said " well let's get you there. " Like that >was my fault! And Lord, he was talking so fast! Told >him about hair loss and itchy scalp, told me to tell >the dermy! Then when he said " what do you expect me >to do, " my eyes bugged out...and told him to give me a >referal for the EMG, well, that should come from my >primary care, but grudgingly he wrote out the request, >and more blood - Aldolase and full CK. You know, >this proves it - men get PMS, too! > >But my GP was my hero...she herself called and made an >appointment for me for tomorrow to get an EMG!!! >Yahoo...this ought to give a clearer picture and help >them decide if I need the muscle biopsy. > >Lynn > > >===== >*~*~*~*You can drown in your stream of consciousness. Make sure >the drain runs freely.~*~*~*~ > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2001 Report Share Posted October 4, 2001 hm..just out of curiosity...but isn't it possible that a cpk level can appear to be somewhat in the normal range...yet you can have severe weakness due to the fact that so much of your muscle fibers are already damaged? so technically your muscle itself isn't as hm..i guess useful as it would normally be? er...did i just confuse everyone? i dunno but that's kind of what i think because right now my cpk level is at 1,200 [the lowest i've had so far] and i'm really weak...i can't bring my left arm over my head...i have difficulty getting up from a chair...i have trouble picking things up off the ground and i can't get up from the floor...yet there was a time when my cpk level was at 6,000 and i was able to run...participate in marching band...get up off the ground like it was nothing and do full sit-ups...and i can't even lift my head off the bed right now....well..that's my input so i hope it helps! lots of hugs and smiles, susan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2001 Report Share Posted October 4, 2001 thank for the compliment lynn! and yeah dm is rare...but its so much more common than pm..=[ i've met about 5 people at the hospital i go to who have dm...but i still havent met anyone with pm....turns out i'm the only one at childrens hospital in los angeles who has pm...so it's nice that i have a place here where i can communicate with people in the same boat as me. and don't act like the "dumb" patient with the doctor! i say show the doctor how much you know and how much you've learned and make him see how much tougher you are than he is cause you're the one who's actually strong enough to go through all this crap. so far is sounds like your doc is a meanie...[i'd like to say jerk but i don't know if thats being too mean hehe] and with a doc like that...i say stump him with your knowledge on things he probably thought you didn't know....it'd be fun to see his reaction hehe lots of hugs and smiles, susan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2001 Report Share Posted October 4, 2001 ...you make loads of sense...I'm thinking I need to ask a question when I hear official results of the EMG...and probably it should be is the damage permanent, what is necrosis (just so they think I'm still the dumb patient) and has that happened? Also, since DM is " rare " can one rheumy know all the ins and outs??? Mine says if my ck goes down it's not DM, but I think he's wrong, and from what I'm hearing here, he is! I need to find some research somewhere to support that...so if anyone has anything related, please help me out!! ...I finally got my hand up to the top of my head...and got my hat off to ya! You are quite a young lady! Hugs, Lynn --- ditzyxgyrl@... wrote: > hm..just out of curiosity...but isn't it possible > that a cpk level can appear > to be somewhat in the normal range...yet you can > have severe weakness due to > the fact that so much of your muscle fibers are > already damaged? so > technically your muscle itself isn't as hm..i guess > useful as it would > normally be? er...did i just confuse everyone? i > dunno but that's kind of > what i think because right now my cpk level is at > 1,200 [the lowest i've had > so far] and i'm really weak...i can't bring my left > arm over my head...i have > difficulty getting up from a chair...i have trouble > picking things up off the > ground and i can't get up from the floor...yet there > was a time when my cpk > level was at 6,000 and i was able to > run...participate in marching band...get > up off the ground like it was nothing and do full > sit-ups...and i can't even > lift my head off the bed right now....well..that's > my input so i hope it > helps! > > lots of hugs and smiles, > susan > ===== *~*~*~*You can drown in your stream of consciousness. Make sure the drain runs freely.~*~*~*~ __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2001 Report Share Posted October 4, 2001 Hi Lynn.... It's going to be interesting to find out what your Dermo say's about your skin biopsy. Now, as for your dingbat doctor... this really gets me. Your the one sick and he talks to you like it's all YOUR fault his nurse forget to tell him something... that really burns me up. I've talked to many people with low to normal labs and THEY have DM or PM. My labs have been normal for 2 1/2 yrs yet I have muscle weakness and go in and out of flares. I'll try to find you the article regarding this. Sounds like your doctor needs to go back to class. When he asked you " what do you expect me to do " .... I would have snapped back and said " be my doctor and explain things to me " . It really drives me nuts to hear doctors talk like that to patients that are there to get help. Hope you had a good day Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2001 Report Share Posted October 4, 2001 Hi Cari All my labs were under control by the 6 month mark. It's been 2.5 yrs of normal labs and it doesn't mean squat....lol You said...Lounging by the pool side in San Diego with a lot of our friends, drinking Pina Coladas..... NOT!!!!! I got the gals checked into the hotel and even though book a handicap room in JUNE and I called in August to confirm and I called again a week ago to confirm the extra bed and the room... When we got there tonight we didn't have a room. They had to scramble to find a room for them AND it's not a handicap room... they did however come in and put a hand held shower head. Still, there are NO hand bars in side the shower... it's also a tub shower which is very hard to get into if the bars are not there. They didn't seem to care about this. The BBQ should have been earlier in the day as the night air came in and we had to move our table inside. My thinking was, these are people already sick...some with lung problems and when you're around the bay it's very damp when the sun sets. Ok, those are my pet peeves for today. Tomorrow I leave to join Teddi and . I haven't meet anyone else so I'm hoping I will tomorrow. I'll be back on line by Sunday evening. Hope everyone has a great day. Take care, Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2001 Report Share Posted October 5, 2001 Hi Lynn Your Rheumy is wrong.... You are right though... DM and all the other myositis are very rare. A Rheumy in a small practice will not have the advantage of learning about this disease as the Rheumys in your larger clinics. Those of us that are near the larger clincs end up there and get better care. Your Rheumy is probably reading all this out of an outdated medical book. This disease has taken so many twists and turns that even things a year ago are no longer thought to be so. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2001 Report Share Posted October 5, 2001 ... From everything I've read, JPM is extremely rare. I also talk to more people with DM than PM. I've asked if PM is rarer than DM and the doctors told me it's about the same. Guess I just haven't found all the PM'ers out there. Your's though, must be in a record book or something... how many other JPM has your doctor seen? Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2001 Report Share Posted October 5, 2001 Yes, ... You're absolutely right. Even when my levels are "normal" I can't get up off the floor when I fall, I can't lift my grandbabies, and I can't climb any kind of incline. I don't know why this is, and I believe the experts can't explain it either. Got to be permanent muscle damage, I think. Annette -----Original Message-----From: ditzyxgyrl@... Sent: Thursday, October 04, 2001 8:51 PMTo: OurMyositis Subject: Re: My Dayhm..just out of curiosity...but isn't it possible that a cpk level can appear to be somewhat in the normal range...yet you can have severe weakness due to the fact that so much of your muscle fibers are already damaged? so technically your muscle itself isn't as hm..i guess useful as it would normally be? er...did i just confuse everyone? i dunno but that's kind of what i think because right now my cpk level is at 1,200 [the lowest i've had so far] and i'm really weak...i can't bring my left arm over my head...i have difficulty getting up from a chair...i have trouble picking things up off the ground and i can't get up from the floor...yet there was a time when my cpk level was at 6,000 and i was able to run...participate in marching band...get up off the ground like it was nothing and do full sit-ups...and i can't even lift my head off the bed right now....well..that's my input so i hope it helps! lots of hugs and smiles, susan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2001 Report Share Posted October 5, 2001 Lynn... IS quite a young lady... I agree. Annette Re: My Day ...you make loads of sense...I'm thinking I need to ask a question when I hear official results of the EMG...and probably it should be is the damage permanent, what is necrosis (just so they think I'm still the dumb patient) and has that happened? Also, since DM is " rare " can one rheumy know all the ins and outs??? Mine says if my ck goes down it's not DM, but I think he's wrong, and from what I'm hearing here, he is! I need to find some research somewhere to support that...so if anyone has anything related, please help me out!! ...I finally got my hand up to the top of my head...and got my hat off to ya! You are quite a young lady! Hugs, Lynn --- ditzyxgyrl@... wrote: > hm..just out of curiosity...but isn't it possible > that a cpk level can appear > to be somewhat in the normal range...yet you can > have severe weakness due to > the fact that so much of your muscle fibers are > already damaged? so > technically your muscle itself isn't as hm..i guess > useful as it would > normally be? er...did i just confuse everyone? i > dunno but that's kind of > what i think because right now my cpk level is at > 1,200 [the lowest i've had > so far] and i'm really weak...i can't bring my left > arm over my head...i have > difficulty getting up from a chair...i have trouble > picking things up off the > ground and i can't get up from the floor...yet there > was a time when my cpk > level was at 6,000 and i was able to > run...participate in marching band...get > up off the ground like it was nothing and do full > sit-ups...and i can't even > lift my head off the bed right now....well..that's > my input so i hope it > helps! > > lots of hugs and smiles, > susan > ===== *~*~*~*You can drown in your stream of consciousness. Make sure the drain runs freely.~*~*~*~ __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2001 Report Share Posted October 5, 2001 Lynn, Vicki is right about always needing the latest information and how quickly it changes. We are lucky enough to live in a huge medical community. We have 8 major hospitals in a 30 mile radius around Augusta. is seen at the Medical College of GA. Most of our neighbors are Doctors or are somehow related to the medical field. Juvenile DM is more rare then Adult DM but just an example of how things change in short amount of time: When was first Dx in Jan '99 his disease was thought to be found in 1 out of every 5,000,000 children. Now it is found in 1.5 in every 1,000,000. I don't believe more children are getting it, I think more Dr.s are being educated and children are being properly diagnosed sooner. I am talking to a mother who's 3 year old, na, was just diagnosed in the last few weeks. She was diagnosed by a Dermotologist. In order for a disease to be considered rare it must occur less then 1 in 200,000 people. 's Dr. is constantly on the internet with a group of Juvenile Rheumotologists. That is where she went for help with 's hip symptoms. These diseases are too rare and have too many different symptoms to think one can pick up a book and learn about it. I completely agree with . Bombard your Dr. with the information that you know. Bring in current information. Make him wonder why his patient knows more then he does. Maybe he will be embarrassed enough to educate himself. , you sound mature beyond your years! Way to go! Hugs, Cari >From: anzavic@... >Reply-To: OurMyositis >To: OurMyositis >Subject: Re: My Day >Date: Thu, 4 Oct 2001 23:00:59 -0700 (PDT) > > > >Hi Lynn > >Your Rheumy is wrong.... You are right though... DM and all the other >myositis are very rare. A Rheumy in a small practice will not have the >advantage of learning about this disease as the Rheumys in your larger >clinics. Those of us that are near the larger clincs end up there and >get better care. Your Rheumy is probably reading all this out of an >outdated medical book. This disease has taken so many twists and turns >that even things a year ago are no longer thought to be so. > >Vicki > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2001 Report Share Posted October 8, 2001 i was actual the first JPM my doctor has seen. i've been through about 4 doctors and i was the first for all of them. they've seem juvenile dermatomyositis but polymyositis. they were actually going to diagnose me as DM but realized i didnt have any rashes and were finally like "oh okay PM..it's PM" so yeah...its pretty frustrating since those that i run into at my hospital who are somewhat in the same boat as me all have DM. susan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2001 Report Share Posted October 8, 2001 annette, its odd how we can come up with our own little explainations yet the doctors can't themselves. susan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2001 Report Share Posted October 9, 2001 ... It would seem to me that the doctors would love to treat you because you are sooooooo rare. Like NIH or s Hopkins... Where do you go for treatment? Vicki Quote Link to comment Share on other sites More sharing options...
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