Guest guest Posted July 14, 2004 Report Share Posted July 14, 2004 Wayne, Glad you have decided to join in. If you have been reading many of us have had a ALS dx. Its just a process of elimination and many tests and finding a doctor that has experience with PLS patients. I was dx in 6 months to a year but was told ALS on the first visit. then after numerous tests I got the PLS dx and that was back in 1996......................................Flora Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2004 Report Share Posted July 14, 2004 Hi Wayne Sounds like your in the same boat as Edith and I. Clinically I'm PLS but officially - hot off the Cleveland Clinic press I have just been downgraded from 'probable' to 'possible ALS'. You have to admit that it's pretty unique to be downgraded in the ALS arena. lol How is your 'stuff' presenting? Do you use a cane, walker, or scooter? Is it both sides or one? Is your speech affected? Do you walk slow? Are you still working? If you've been reading you probably already know: Mine started as Bulbar Palsy with 60% understandability. Latest report 95% understandability (on certain days drive thrus still can't understand me) Then after 4 years and thinking I was home-free the stuff started in my left foot and leg. I now use a cane (or magic wand as I like to call it) Welcome to our wonderful group Eva in WV Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2004 Report Share Posted July 14, 2004 Hi Wayne: Glad you dropped in to say hello. I think there are a few of us that kind of 'ride the fence' between PLS and ALS but for the most part the symptoms seem the same in the early stages. I post periodically on the ALS group, but mostly read the posts. Both of these groups offer great support no matter what the final outcome is. Hope we hear from you again. Take care. Jo (Northern Ontario) Test post > Hello, > > I've read this forum for a couple of years but haven't posted. I've > had symptoms for 2 and 1/2 years and tentatively dx with PLS although > my doctor still says it could be ALS. I go to UT Southwestern in > Dallas with Dr. Elliot and Dr. Nations. I usually post on the ALS > Braintalk forum. Just thought I would say hello. > > Wayne > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2004 Report Share Posted July 14, 2004 Hi Wayne, I am glad you posted, welcome aboard. I was first diagnosed with M.S then it changed to PLS go figure. Good luck on your visits to the doctors, please let us know how things go. Sandy Test post Hello, I've read this forum for a couple of years but haven't posted. I've had symptoms for 2 and 1/2 years and tentatively dx with PLS although my doctor still says it could be ALS. I go to UT Southwestern in Dallas with Dr. Elliot and Dr. Nations. I usually post on the ALS Braintalk forum. Just thought I would say hello. Wayne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 Hello Wayne, Welcome to the PLS group. Was wondering where you live in Texas. I live in Longview. I went to the Univ of Texas, Southwest School of Medicine when symptons first started. I saw a Dr. Dewey (Dewey in Dallas) who diagnosed me with Parkinson but after 3 months of being on Mirapex and symptons worse he said not Parkinson. Then went to Dr. Jankovic at Baylor College of Medicine in Houston for 2 yrs who said Stiffman Syndrome but after not responding to the meds said not Stiffman. (I have often wondered who in the heck does respond to the meds.) Neuro here in Longview said PLS 1-13-03, but I guess I am still not responding to the meds. (could it be I never take the full dose prescribed? LOL) Am taking 20 mgs baclofen a day, .25 Klonopin a day plus supplements COQ10 and Creatine. She prescribed 60 Baclofen a day plus 4 mgs of Zanaflex. I don't think there is a portion of my anatomy not affected. Toes curl under, feet are stiff, legs stiff with pain in hamstring, butt hurts when sitting, arms hard to raise over head, hands are weaker and just noticed this week I can no longer cross my finders, breathing affected can no longer whistle or blow out a candle, facial muscles are tight, talk Martian, some trouble swallowing. other than that I'am GREAT! Use walker in house and w/c outside. Right now I am at computer watching a pair of peacocks looking in the window watching me, drinking a Dr. Pepper and eating figs before the peacocks finish them off! Life ain't bad, as Mike Gray once said " just different " . Smiles to you from the Piney Woods of East Texas. Arlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 Hey Arlene. Hello and thanks for the welcome. I live in Fort Worth and still work, drive, walk, and everything else but run. I'm just dang stiff. Just three years ago, I played my last season of soccer. Its hard for me to imagine that now. When did you first start these symptoms? Wayne > Hello Wayne, > > Welcome to the PLS group. > Was wondering where you live in Texas. I live in Longview. > I went to the Univ of Texas, Southwest School of Medicine when symptons > first started. I saw a Dr. Dewey (Dewey in Dallas) who diagnosed me with > Parkinson but after 3 months of being on Mirapex and symptons worse he > said not Parkinson. Then went to Dr. Jankovic at Baylor College of > Medicine in Houston for 2 yrs who said Stiffman Syndrome but after not > responding to the meds said not Stiffman. (I have often wondered who in > the heck does respond to the meds.) Neuro here in Longview said PLS > 1-13-03, but I guess I am still not responding to the meds. (could it be > I never take the full dose prescribed? LOL) Am taking 20 mgs baclofen a > day, .25 Klonopin a day plus supplements COQ10 and Creatine. She > prescribed 60 Baclofen a day plus 4 mgs of Zanaflex. > I don't think there is a portion of my anatomy not affected. Toes curl > under, feet are stiff, legs stiff with pain in hamstring, butt hurts > when sitting, arms hard to raise over head, hands are weaker and just > noticed this week I can no longer cross my finders, breathing affected > can no longer whistle or blow out a candle, facial muscles are tight, > talk Martian, some trouble swallowing. other than that I'am GREAT! > Use walker in house and w/c outside. > Right now I am at computer watching a pair of peacocks looking in the > window watching me, drinking a Dr. Pepper and eating figs before the > peacocks finish them off! Life ain't bad, as Mike Gray once said " just > different " . > Smiles to you from the Piney Woods of East Texas. > Arlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2004 Report Share Posted July 16, 2004 Hello Eva, I certainly hope you maintain your PLS rating. Good luck on that. The symptoms did spread everywhere pretty quickly but I'm still pretty functional. I use a walking stick for balance. My speech is only a little slurred some of the time. The main problem I have is that I'm just spastic and stiff almost everywhere. If its PLS then it's a pretty fast one. If its ALS, its pretty slow. Either way, its just so fun to be unique. (ha ha) Wayne Re: Test post Hi Wayne Sounds like your in the same boat as Edith and I. Clinically I'm PLS but officially - hot off the Cleveland Clinic press I have just been downgraded from 'probable' to 'possible ALS'. You have to admit that it's pretty unique to be downgraded in the ALS arena. lol How is your 'stuff' presenting? Do you use a cane, walker, or scooter? Is it both sides or one? Is your speech affected? Do you walk slow? Are you still working? If you've been reading you probably already know: Mine started as Bulbar Palsy with 60% understandability. Latest report 95% understandability (on certain days drive thrus still can't understand me) Then after 4 years and thinking I was home-free the stuff started in my left foot and leg. I now use a cane (or magic wand as I like to call it) Welcome to our wonderful group Eva in WV Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2004 Report Share Posted July 16, 2004 Hello Jo. Thanks for the greeting. This seems like a great group and I plan to post more. Wayne Test post > Hello, > > I've read this forum for a couple of years but haven't posted. I've > had symptoms for 2 and 1/2 years and tentatively dx with PLS although > my doctor still says it could be ALS. I go to UT Southwestern in > Dallas with Dr. Elliot and Dr. Nations. I usually post on the ALS > Braintalk forum. Just thought I would say hello. > > Wayne > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2004 Report Share Posted July 16, 2004 Hello Sandy, At the very first, my regular neuro was sure it was just a neck injury from me playing soccer. But that soon changed as the symptoms spread. Thanks for the welcome. Wayne Test post Hello, I've read this forum for a couple of years but haven't posted. I've had symptoms for 2 and 1/2 years and tentatively dx with PLS although my doctor still says it could be ALS. I go to UT Southwestern in Dallas with Dr. Elliot and Dr. Nations. I usually post on the ALS Braintalk forum. Just thought I would say hello. Wayne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2004 Report Share Posted July 16, 2004 Hi Wayne, Welcome to the group. I was first dx with ALS then MS and finally PLS. I'm progressing fast too. Symptoms started in 2000 and in 2002 I was dx. Now I'm in a wheel chair 95% of time and my speech is slured to the point that I cannot order through a drive up window. My left hand does it's own thing and my balance is all but gone. I look forward to dancing again one day and I hope you will dance again soon. Donna - NC - PLS > Hello Eva, > > I certainly hope you maintain your PLS rating. Good luck on that. > The symptoms did spread everywhere pretty quickly but I'm still pretty functional. I use a walking stick for balance. My speech is only a little slurred some of the time. The main problem I have is that I'm just spastic and stiff almost everywhere. If its PLS then it's a pretty fast one. If its ALS, its pretty slow. Either way, its just so fun to be unique. (ha ha) > > Wayne > Re: Test post > > > Hi Wayne > Sounds like your in the same boat as Edith and I. Clinically I'm PLS > but officially - hot off the Cleveland Clinic press I have just been > downgraded from 'probable' to 'possible ALS'. You have to admit that > it's pretty unique to be downgraded in the ALS arena. lol > > How is your 'stuff' presenting? Do you use a cane, walker, or > scooter? Is it both sides or one? Is your speech affected? Do you > walk slow? Are you still working? > If you've been reading you probably already know: Mine started as > Bulbar Palsy with 60% understandability. Latest report 95% > understandability (on certain days drive thrus still can't understand > me) Then after 4 years and thinking I was home-free the stuff > started in my left foot and leg. I now use a cane (or magic wand as I > like to call it) > Welcome to our wonderful group > Eva in WV > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2004 Report Share Posted July 17, 2004 Hello Donna. Thanks for the welcome. If they find a cure, save a dance for me! Wayne > > Hello Eva, > > > > I certainly hope you maintain your PLS rating. Good luck on that. > > The symptoms did spread everywhere pretty quickly but I'm still > pretty functional. I use a walking stick for balance. My speech is > only a little slurred some of the time. The main problem I have is > that I'm just spastic and stiff almost everywhere. If its PLS then > it's a pretty fast one. If its ALS, its pretty slow. Either way, > its just so fun to be unique. (ha ha) > > > > Wayne > > Re: Test post > > > > > > Hi Wayne > > Sounds like your in the same boat as Edith and I. Clinically I'm > PLS > > but officially - hot off the Cleveland Clinic press I have just > been > > downgraded from 'probable' to 'possible ALS'. You have to admit > that > > it's pretty unique to be downgraded in the ALS arena. lol > > > > How is your 'stuff' presenting? Do you use a cane, walker, or > > scooter? Is it both sides or one? Is your speech affected? Do > you > > walk slow? Are you still working? > > If you've been reading you probably already know: Mine started > as > > Bulbar Palsy with 60% understandability. Latest report 95% > > understandability (on certain days drive thrus still can't > understand > > me) Then after 4 years and thinking I was home-free the stuff > > started in my left foot and leg. I now use a cane (or magic wand > as I > > like to call it) > > Welcome to our wonderful group > > Eva in WV > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2004 Report Share Posted July 17, 2004 -Wayne as you can see there are alot of good people on this site. I want to welcome you and say I have found out more about PLS from here than from my Dr. I was Dx in Nov. 03 as others and my biggest problem is walking. again glad to have you aboard. -- In PLS-FRIENDS , " Wayne " <wcg_89@m...> wrote: > Hello, > > I've read this forum for a couple of years but haven't posted. I've > had symptoms for 2 and 1/2 years and tentatively dx with PLS although > my doctor still says it could be ALS. I go to UT Southwestern in > Dallas with Dr. Elliot and Dr. Nations. I usually post on the ALS > Braintalk forum. Just thought I would say hello. > > Wayne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2004 Report Share Posted July 17, 2004 Dennis, Thanks for the welcome. I see that you were recently diagnosed. If you don't mind me asking, how long have you had symptoms? When did you first notice something wrong? Thanks. Wayne > > Hello, > > > > I've read this forum for a couple of years but haven't posted. > I've > > had symptoms for 2 and 1/2 years and tentatively dx with PLS > although > > my doctor still says it could be ALS. I go to UT Southwestern in > > Dallas with Dr. Elliot and Dr. Nations. I usually post on the ALS > > Braintalk forum. Just thought I would say hello. > > > > Wayne Quote Link to comment Share on other sites More sharing options...
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