Guest guest Posted March 20, 2001 Report Share Posted March 20, 2001 Janet The only thing I can contribute is that Freak says the reason I feel so bad is not because of the PM, but because I have now developed steroid myopathy from the prednisone and the buzzing that I have been feeling in my feet he attributes to neuropathy. He says he cant explain the neuropathy though in relation to the PM. Doesnt think it is related. I think he is related to some species not yet recognized !!! My cats knead me !!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2001 Report Share Posted March 20, 2001 Janet.....in my pre-diagnosis days, my doctor always said "some type of myopathy"....and I ended up with Dermatomyositis. Since then I've assumed that myopathy=myositis ???? Could be wrong, it's happened before :-) Also.....my EMG came out as 'normal' too and I never had the biopsy, I think because my doctor knew there were too many false readings with them....and she also wasn't overly excited to bore a hole in my shoulder! Hang in there! You'll get a dx one of these days. Connie myopathy Hi All:My doctor called today and tells me she thinks I have some type of myopathy as opposed to myositis. She says there is no evidence of inflamation from the EMG or the muscle biopsy. But there is weakness. She has no clue from what. Has anyone else been told this before? I am now going to be re-evaluated as she has no idea where to go from here. I don't know if this is a positive or a negative. Any ideas from you guys? Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2001 Report Share Posted March 20, 2001 Hi .....in the beginning months of my "journey" I had major neuropathy in my hands, feet, arms and legs. Until I finally got on the Minocin, my hands felt like I had slammed them on the counter top.....that reverberating pain~~~~~ I also had that buzzing feeling and got very tired of it! From what I've read, the neuropathy is not part of DM/PM, but from other people I've spoken with.....it is! I think they better re-write the medical books. Connie :-) Re: myopathy Janet The only thing I can contribute is that Freak says the reason I feel so bad is not because of the PM, but because I have now developed steroid myopathy from the prednisone and the buzzing that I have been feeling in my feet he attributes to neuropathy. He says he cant explain the neuropathy though in relation to the PM. Doesnt think it is related. I think he is related to some species not yet recognized !!! My cats knead me !!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2001 Report Share Posted March 20, 2001 Hi Janet... When you talk with your doctor the next time...ask if she'll refer you to the MDA Clinic for testing. They will test you for different muscle diseases. There should be a clinic near you that you can go to. The MDA knows what to look for and it will include myositis as well. Here's the URL for the MDA....just put in your zip code and it will locate the office near you. <a href= " http://www.mdausa.org/clinics/index.html " >click here</a> Hope this helps.... Take care, Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2001 Report Share Posted March 20, 2001 .... Gosh, I'm surprised that Dr. Freak even knew that much. He must have done some reading that day... Oh, am I bad or what....! He also probably owns all the AM/PM stores in your area. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2001 Report Share Posted March 20, 2001 , Steroid Myopothy is what my reumatologist is saying is part of my problem!!! I take 10 mgs of Prednisone and 50 mgs of imuran. I can't seem to lower the Pred.--when I do, I get so weak, I can't get out of bed. I think, I have IBM and Poly. Have you ever heard of having 2 dx? With the help of pain med. I'm feeling great!!Naturally I have something--to be feeling on top of the World. What can you do for Steriod Myopothy?? Love ya, Ev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2001 Report Share Posted March 21, 2001 What is The Outlook ????? My cats knead me !!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2001 Report Share Posted March 21, 2001 Ev I am currently at 2.5 mg/day of Pred. He lowers me every time I go in and I think that is one reason I hurt so much. He does it toooooo fast. Also, he tells me to take Ultram for the pain but I cant function when I do. I am like a big blob of jelly sitting at my desk and that just doesnt go over too well. I do however take it at night. My cats knead me !!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2001 Report Share Posted March 21, 2001 Good Morning Everyone..... Hi Ev.... the only thing you can do for steroid myopathy is decrease the Prednisone. In order to do this you might have to go up on your Imuran. I started out on 150mg of Imuran. I was then able to decrease the Prednisone to 3mgs and I've stayed there. About four months ago the doctor suggested decreasing the Imuran also. I'm currently at 100mg a day. It's the Imuran that will allow you to decrease the Prednisone. You can have IBM and Poly at the same time. But Ev, did they do muscle biopsy on you for the IBM or PM? PM, in the more advance stage, doesn't follow suit to what doctors say it should. Meds sometimes don't work on the patient. For many years the doctors felt that if the meds didn't work on a person with PM it was then thought they have IBM. Now they know different. I go through many ups and downs. I never know when it will hit...Yet, my labs are all normal but climbing a bit. How many of you received your current " The Outlook " .... ????? Hope everyone is having a good day... Take care, Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2001 Report Share Posted March 21, 2001 Dear Vicki, and everyone else. I had a biopsy for IBM--no Dr. has ever said I have Poly. and IBM--rhat was my own theory. but I've heard if you have IBM, Prednisone, does not help it. I go see my Reumatologist. on May 2nd. and I willmention, the imuran and getting down off the Pred.I've been on Predisone ever since 1991. Every thing is still on gooo with Steve and I. He is coming down April 20th, to take me back to see where I will live!!! Also will meet my step daughters-to be!!He has met 2 of my daughters and has one to go--she lives in Death Valley--a Ranger for the Fed. gov. We plan to get married October 31st or before. Really getting exciting--to say the least!! Will keep all of you informed!! As ever, ev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2001 Report Share Posted March 21, 2001 Ohhhhhhhhh - a Halloween wedding - my fav !!!!! My cats knead me !!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2001 Report Share Posted March 21, 2001 Oh thanks !! I had never heard of the Outlook before. My cats knead me !!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2001 Report Share Posted March 21, 2001 Hi ... when you join the MAA you'll receive " The Outlook " . It's a news letter (pamphlet) that keeps you updated on the latest improvements. This time they have a list of exercises for strength and flexibility. Members write in and tell whats working for them. They talk about the recent research, Enbrel, Remicade, Creatine Monohydrate. And, now the MDA recognizes IBM.... Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2001 Report Share Posted March 21, 2001 Hi Ev.... Ooooh, I thought a doctor had told you that you had PM then he switched his diagnosis. I understand now. I've got you on my calendar for the 31st of Oct. I'm so thrilled for both of you. Take care, Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 Vicki,, I did receive my out look--Had to pay 40.00, for my subscription, this time. Guess its like every thing else--inflation forces them to up their price. Its a little high, but really informative--as will every that gets it--will tell you/ Love ya Ev. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 Hello Sweetheart, Another congrats--Seems like the whole group is behind us-- Love you, Evie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 Hi Ev.... after you said you paid $40.00 for your renewal, I had to look in the back of the " Outlook " to see what the current price is.... I was shocked to see that membership is now $50.00....... Makes it very difficult for people who are strictly on SSI to pay for it. I can see $30.00, which is what I paid, and my renewal hasn't come up yet. Hope your having a great day. Take care Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 > Hi Ev.... after you said you paid $40.00 for your renewal, I had to > look in the back of the " Outlook " to see what the current price > is.... I was shocked to see that membership is now $50.00....... > Makes it very difficult for people who are strictly on SSI to pay > for it. I can see $30.00, which is what I paid, and my renewal > hasn't come up yet. Hope your having a great day. This is a topic I raised on the MAA's BB today. See: http://www.myositis.org/myositisBoard/posts/9179.html Ralph ========================================================== Ralph Becker http://www.ralphb.net/ Will Juggle for Food. RKBA! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 Good letter, Ralph. It sure seems that these kinds of organizations take on a life of their own and sometimes forget their real purpose.....to find a cure for whatever disease they are representing. Just think how much money is poured into the Cancer Society, the Arthritis Foundation, the Heart Association.....etc. I'm to the point where I would rather it would be 'show me the cure and then I'll show you the money.' Do any of these organizations give much credence to the antibiotic theory, despite the fact that recent press has publicized a growing acceptance of the germ theory in rheumatic disease, cancer and heart disease?.....not nearly enough. Why.....there's not a lot of money to be made by selling an antibiotic that's patent has expired. Feeling better after venting, thanks for being there, everyone, Connie Re: myopathy > Hi Ev.... after you said you paid $40.00 for your renewal, I had to> look in the back of the "Outlook" to see what the current price> is.... I was shocked to see that membership is now $50.00.......> Makes it very difficult for people who are strictly on SSI to pay> for it. I can see $30.00, which is what I paid, and my renewal> hasn't come up yet. Hope your having a great day.This is a topic I raised on the MAA's BB today. See:http://www.myositis.org/myositisBoard/posts/9179.htmlRalph==========================================================Ralph Becker http://www.ralphb.net/Will Juggle for Food. RKBA! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 Hi Ralph.... Just wanted to thank you... you sure have a way with words. By the way...can you tell me Earl Kleins position at the MAA? I also read his letter .... I guess this means I will only receive my Outlook for one more year. Thanks again, Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2001 Report Share Posted March 23, 2001 I know I certainly dont have $50.00 for a subscription to anything !!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2001 Report Share Posted March 23, 2001 > Hi Ralph.... Just wanted to thank you... you sure have a way with words. Thanks, that's very kind of you to say. > By the way...can you tell me Earl Kleins position at the MAA? I also > read his letter .... I guess this means I will only receive my Outlook > for one more year. I believe Earl is chairman of the board of directors of the MAA. Ralph ========================================================== Ralph Becker http://www.ralphb.net/ Will Juggle for Food. RKBA! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2001 Report Share Posted March 23, 2001 It is a shame. I had paid the $30. $50 puts it over the edge for us. I won't be renewing. Cari From: anzavic@... >Reply-To: OurMyositis >To: OurMyositis >Subject: Re: myopathy >Date: Thu, 22 Mar 2001 14:59:46 -0800 (PST) > > > >Hi Ralph.... Just wanted to thank you... you sure have a way with words. >By the way...can you tell me Earl Kleins position at the MAA? I also >read his letter .... I guess this means I will only receive my Outlook >for one more year. > >Thanks again, >Vicki > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
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