Guest guest Posted November 23, 2001 Report Share Posted November 23, 2001 Hi Ed Welcome to the group......never too many questions. By pooling our experiences is the only way we find out a lot of things. So many doctors are clueless. Yes, I used a wheel chair at first and still do in the kitchen. I use an electric cart now when I am going somewhere where I have to walk. BTW Ed, I'm Teddi and was dx with DM 5 yrs ago.......it does get better..not always OK or back like you were but better. Teddi mailto:teddifromok@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2001 Report Share Posted November 23, 2001 Hi Ed!! Welcome here...and here is where it sounds like you belong! I'm Lynn, 52, just got a dx of DM! Have you had an EMG yet? Since that tests muscles in various places on your body, it might be more helpful. Like Vicki said, there's a chance the muscle biopsy may not get a more inflamed area. The EMG should be done by a competent neurologist. It's quite a disease, eh? Talk about baby steps...we give it a whole new definition, don't we? Nice to meet ya! Lynn --- anzavic@... wrote: > > Hi Ed.... Well, I'm sorry to say this, but I feel > you might be in the > right place. Everything you've described is the > same as I went through > just before being diagnosed. Painful and taking > baby steps. I have PM > so I'm assuming that if you don't have the rash, you > have PM. > > Now, I can't figure out why you had to have a biopsy > in both arms and > now both legs? Any reason for that? If they are > willing to use the MRI > to pin point the inflamed muscle, that might save > you from all the > biopsies. The inflammation can be patchy at best > in the muscles. One > reason they might miss it. > > I think the waiting for a diagnosis is the worse > part. The not knowing > for sure can drive a sane person nuts. > > Anyway, Welcome aboard the PM train! > > Take care, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2001 Report Share Posted November 24, 2001 Hi Ed and welcome to our group. I'm Annette, diagnosed with DM about 9 years ago. I used a wheelchair for a couple of months, then graduated to a walker (which for some reason I hated) and then thankfully to a cane, which I still use. I've had excellent medical care, but I never regained my original strength. I'm on a low maintenance dose of prednisone and I attribute it with allowing me to live a life. You mentioned " jumpy legs " at night. Yes, I experience that often. Don't know what causes it though. You'll learn lots from this group...we have some very knowledgeable members who are always eager to help and offer support, information, and even some much-welcome humor from time to time. Hang in there, Ed... I think things will get better for you. Annette Re: ED - Hello Thanks for the welcome. Yes the waiting part is definitely maddening. I think I was a little relieved when I finally came across PM in my web hunt. It just made sense. Everything fit. I think the reason for the double biopsies is because I'm dealing with folks who are relatively clueless when it comes to PM. I mean, there I was laying in prep for the biopsies and the surgeon came up and introduced himself and flat out admitted he had never done a biopsy before. What a thing to tell someone!! Curious, I've heard from some that say the legs get so bad that just collapse on you with no warning. Did you use a wheelchair to get around during the bad times? It was so bad the other day I seriously needed one. And does it feel like your muscles are jumping around at night when you're trying to sleep? The 2nd doc I went to prescribed Amitriptyline to manage the pain though I'm sure she had no clue what she was dealing with. At least she referred me to someone who kinda does. But the pills knock me out after about an hour or so anyways so I do get some rest. *darn newbies, so many questions ....* Ed > > Hi Ed.... Well, I'm sorry to say this, but I feel you might be in the > right place. Everything you've described is the same as I went through > just before being diagnosed. Painful and taking baby steps. I have PM > so I'm assuming that if you don't have the rash, you have PM. > > Now, I can't figure out why you had to have a biopsy in both arms and > now both legs? Any reason for that? If they are willing to use the MRI > to pin point the inflamed muscle, that might save you from all the > biopsies. The inflammation can be patchy at best in the muscles. One > reason they might miss it. > > I think the waiting for a diagnosis is the worse part. The not knowing > for sure can drive a sane person nuts. > > Anyway, Welcome aboard the PM train! > > Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2001 Report Share Posted November 24, 2001 Thanks for the wonderful welcome! I'm just now getting up, sore as hell but at least I can walk half-way decent LOL. Here is some more info about me: http://www.rodgersweb.net/crestview This stupid disease hurts even more considering how active I used to be. At one time I had run two marathons (the 26 mile kind) and used to lift weights (best squat 535 pounds). My wife is 39 with heart disease and diabetes. She had a triple bypass in Sep 99. I also have a son 16 and a daughter 14 with Autism. She's on anti-psychotic drugs to help keep her temper under control. We have 4 beautiful cats, one of which (Squeekies) is my best friend and hangs out with me all the time. I'll try to answer the other posts as I get to it today. God it is so hard just being wore out all the time, isn't it? Hugs to all, Ed > > Hi Ed.... Well, I'm sorry to say this, but I feel you might be in the > right place. Everything you've described is the same as I went through > just before being diagnosed. Painful and taking baby steps. I have PM > so I'm assuming that if you don't have the rash, you have PM. > > Now, I can't figure out why you had to have a biopsy in both arms and > now both legs? Any reason for that? If they are willing to use the MRI > to pin point the inflamed muscle, that might save you from all the > biopsies. The inflammation can be patchy at best in the muscles. One > reason they might miss it. > > I think the waiting for a diagnosis is the worse part. The not knowing > for sure can drive a sane person nuts. > > Anyway, Welcome aboard the PM train! > > Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2001 Report Share Posted November 24, 2001 Nice to meet you Teddi. I'm already gettings " rays of hope " from some of the various tidbits of information I'm finding here. Have a good day! Ed > Hi Ed > Welcome to the group......never too many > questions. By pooling our experiences is > the only way we find out a lot of things. So > many doctors are clueless. > Yes, I used a wheel chair at first and still do > in the kitchen. I use an electric cart now > when I am going somewhere where I have > to walk. > BTW Ed, I'm Teddi and was dx with DM 5 yrs > ago.......it does get better..not always > OK or back like you were but better. > > > Teddi > mailto:teddifromok@w... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2001 Report Share Posted November 24, 2001 Thanks Lynn. I haven't seen any rashes yet and it doesn't sound like I want to. I have had an EMG that was slightly off being normal. I also had something called an Ischemic Arm Muscle test (I think that's what it was called) that showed high levels of lactic acid. Have a wonderful day ok? Ed > > > > Hi Ed.... Well, I'm sorry to say this, but I feel > > you might be in the > > right place. Everything you've described is the > > same as I went through > > just before being diagnosed. Painful and taking > > baby steps. I have PM > > so I'm assuming that if you don't have the rash, you > > have PM. > > > > Now, I can't figure out why you had to have a biopsy > > in both arms and > > now both legs? Any reason for that? If they are > > willing to use the MRI > > to pin point the inflamed muscle, that might save > > you from all the > > biopsies. The inflammation can be patchy at best > > in the muscles. One > > reason they might miss it. > > > > I think the waiting for a diagnosis is the worse > > part. The not knowing > > for sure can drive a sane person nuts. > > > > Anyway, Welcome aboard the PM train! > > > > Take care, > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2001 Report Share Posted November 24, 2001 OMG! So your ankles just give out eh? Should I start practicing falling now LOL? The biopsy was recommended by my civilian Rheumy after a referral from my diving doctor and another referral from the base doctor *ugh*. I ended up having to go to a different base about 160 miles away for the biopsies. The Rheumy was fuming when I told him of the surgeons experience (or lack of) and I helped him run down the phone number of the doc at AFIPs (Armed Forces Institute of Pathology) in D.C. that read the results. So next time, when we do the legs, it will be done locally at the West Florida Medical Center (where the Rheumy works), by his surgeon and read by his Pathologist. The Rheumy will pick out and mark the spots to biopsy himself. It was hell trying to recoup from biopsies in both arms at once. Maybe this time we'll just do one leg but pick multiple spots???? I read somewhere that it was suggested that 5 different areas of the muscle be done at once. That leg feeling sounds exactly like what I have going on here. I'm not having major cramps, just kind of " twinges " of cramping and the feeling that something is moving around in there. The Amitriptyline eventually puts me out so I can sleep and I usually sleep pretty well on it, 10 to 12 hours. Before all this I normally only needed 4 to 5 hours to function just fine. I'm on no other meds. Hope your day goes well! Ed > > Hi Ed..... > > Gosh, it doesn't sound good that they don't have a clue on how to do a > biopsy. It has to be prepared properly and sent to a lab that also > knows what to look for. Can they refer you to a larger clinic for the > biopsy? Are you seeing a Rheumatologist? > > Many times my legs or actually it's my ankles that give out. I can tell > you that I've learned to hit the ground gracefully.... with a THUD!!! > I haven't needed a wheel chair yet but about 6 months ago I thought I > was getting very close, then I started moving in the other direction and > getting better. > > I started having the jumping feeling in my legs and cramping. At night > I felt like I had to move my legs just to stop the feelings inside them. > I have what is called Restless Leg Syndrome. They put me on Clonazepam > and it stopped it right away. Now I only take it when the symptoms come > back. > > I have muscle pain so I take Celebrex which works very well on me. > Others on the list take Vioxx. Are you on any other meds? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2001 Report Share Posted November 24, 2001 Thanks Annette! Appreciate the welcome! Ed > > > > Hi Ed.... Well, I'm sorry to say this, but I feel you might be in > the > > right place. Everything you've described is the same as I went > through > > just before being diagnosed. Painful and taking baby steps. I have > PM > > so I'm assuming that if you don't have the rash, you have PM. > > > > Now, I can't figure out why you had to have a biopsy in both arms > and > > now both legs? Any reason for that? If they are willing to use > the MRI > > to pin point the inflamed muscle, that might save you from all the > > biopsies. The inflammation can be patchy at best in the muscles. > One > > reason they might miss it. > > > > I think the waiting for a diagnosis is the worse part. The not > knowing > > for sure can drive a sane person nuts. > > > > Anyway, Welcome aboard the PM train! > > > > Take care, > > > > > > Quote Link to comment Share on other sites More sharing options...
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