Guest guest Posted January 2, 2006 Report Share Posted January 2, 2006 , There are lots of them. Just go to the Yahoo groups home page (www.yahoogroups.com) and in " Find a Group " put Multiple Sclerosis (if you just put MS you will get lots of irrelevant stuff for Microsoft etc). Read through the descriptions and find one/some that suit your particular ethos. mscured is apparently a very good one from what I have read assuming you want to take an active part in trying to improve and even eliminate symptoms. C Norton wrote: > Went to the MDA clinic today for a follow-up appointment and left with > my head spinning in doubt. Various topics were discussed that had never > been addressed before since being dx PLS November 2002. Now some more > tests are being scheduled this month. Anyway, my question is there a > site like PLS-FRIENDS for MS and if so, please forward it direct and > thanks to all of you good people. > > Norton Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2006 Report Share Posted January 3, 2006 Hey They did a spinal tap on me for MS and it came back perfectly clean ,no growths or bacteria, banding was good ,whatever that means GEO > > Went to the MDA clinic today for a follow-up appointment and left with > my head spinning in doubt. Various topics were discussed that had never > been addressed before since being dx PLS November 2002. Now some more > tests are being scheduled this month. Anyway, my question is there a > site like PLS-FRIENDS for MS and if so, please forward it direct and > thanks to all of you good people. > > Norton > > > ---------------------------------------- > I am using the free version of SPAMfighter for private users. > It has removed 102 spam emails to date. > Paying users do not have this message in their emails. > Try www.SPAMfighter.com for free now! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2006 Report Share Posted January 3, 2006 , I had a dx of Chronic-Progressive MS for 10 years before I found a neuro who recognized that without plaque on the brain or brainstem, you don't have MS. My 7th & 8th MRI at an MS clinic finally got me a PLS dx. That change got me off of immunosuppressant drugs (Imuran) daily and steroids (1gm IV Solu-medrol)every three weeks. I now take Valium (5mg) three times a day for spasticity. That's it! Vaughn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2006 Report Share Posted January 3, 2006 In my research last night, 10% of MS dxs show negative results from the spinal tap. What ever that means? Vaughn, may I ask, are your abilities near normal now that your meds are virtually none? Norton RE: MS vs PLS , I had a dx of Chronic-Progressive MS for 10 years before I found a neuro who recognized that without plaque on the brain or brainstem, you don't have MS. My 7th & 8th MRI at an MS clinic finally got me a PLS dx. That change got me off of immunosuppressant drugs (Imuran) daily and steroids (1gm IV Solu-medrol)every three weeks. I now take Valium (5mg) three times a day for spasticity. That's it! Vaughn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2006 Report Share Posted January 3, 2006 & all newbie's: I have had PLS for over 30 years, dx in 1986. After 2 1/2 years of trying to find out what was wrong, I was able to finally find a neuro who knew what PLS was. Shortly after that memorable day, I went to the MDA, and they sent me to another neuro, who said I did not have PLS I had MS (he said this without any testing). I made my mind up that day, that I would accept the dx of PLS, and accept the fact that there is no cure or treatment for this disease, and to try to live my life to the best of my ability, and so far so good. Yes, there has been and I am sure there will be in the future hurdles to cross, but I will deal with it as I come to them. The best thing you can do, in my opinion, is to listen to your body and it will tell what it can and can't do. Use your energy to enjoy life to the best of your ability, instead of spending time running from one doctor to another only to get the end result, PLS!!!! Get to meet other PLSer's, that is the best medicine you can ever receive. Remember PLS is life changing NOT life threatening. Try to stay stress free as possible, and try to accept there are no magic cure's out there. Just have faith that these wonderful researcher will find a cure. Happy New Year to all! Rita Till next time! Love & Hugs ****************************** Some people succeed in spite of their handicap. Others succeed because of them. RE: MS vs PLS , I had a dx of Chronic-Progressive MS for 10 years before I found a neuro who recognized that without plaque on the brain or brainstem, you don't have MS. My 7th & 8th MRI at an MS clinic finally got me a PLS dx. That change got me off of immunosuppressant drugs (Imuran) daily and steroids (1gm IV Solu-medrol)every three weeks. I now take Valium (5mg) three times a day for spasticity. That's it! Vaughn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2006 Report Share Posted January 3, 2006 , Unfortunately my abilities are far from normal, but not nearly as bad as some. My balance is still shot - I use two fore-arm canes. The few times I use only one (around the house), I find it very difficult to make any adjustment in my direction of travel. I tend to keep going until I find something to put my other hand on, or I just stop and start again. My voice is nasal, but again not nearly as bad as some. If I slow down (not difficult since I'm from TN) and concentrate on diction, most of the time I can make myself understood. The most problem I have is with young people. They all tend to talk quite fast, therefore they think fast. When they hear me, they can't make the adjustment to slow speech. With most older people, I seldom have a problem. My foot drop hasn't changed, particularly if I try to hurry - which for me is a relative term. When I slow down and concentrate on lifting my feet, I tend to do pretty good. I have never had any pain, discounting a charley horse from stretching when I first wake up. A big ol' charley horse in the calf of ones leg sure does make it slow in getting to the floor to press down the front of my foot. I really haven't progressed very much in the last 10 years. In fact, my startle reflex has improved to the point I have started shooting again - guns that is. I can go to the shooting range and the only thing that bothers me is a .44 magnum right beside me. That would make a corpse jump. Good luck on getting a definite dx. I have gone through six neuro's since '96, and am about to change again. I went to my current one last week for the first time in about three years. I only went to try to find someone to test me for a baclofen pump. So far no luck here in Knoxville. Just hang in there, . The name doesn't really matter as long as the symptoms can be treated (improved). Vaughn > RE: MS vs PLS > > In my research last night, 10% of MS dxs show negative > results from the spinal tap. What ever that means? > > Vaughn, may I ask, are your abilities near normal now that > your meds are virtually none? > > Norton Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 , Basically it means that spinal taps are not a particularly good indicator of MS on their own. The things they are looking for in a spinal tap for MS (oligoclonal bands) don't exist in 5 - 10% of people who have MS and do appear in up to 100% of people with other conditions (eg. herpes simplex encephalitis). So existence or otherwise of the bands on its own is not a good indicator of MS. Can I please ask you something as a fellow long term member of PLS-FRIENDS? If your diagnosis is changed to MS it is almost certain that your neuro(s) will push very hard to get you onto one of the CRAB drugs (they will usually refer to them as the ABCR drugs but people who have suffered their often horrific side effects soon come to know them as the CRAB drugs). CRAB = Copaxone Rebif Avonex Betaseron, four different drugs used to 'treat' MS. All I ask is that before you let them talk you into one of them please research very carefully into the supposed benefits of each versus the often very significant side effects. On the lowdosenaltrexone Yahoo group (one well worth joining, especially if you do turn out to have MS as the majority of people on it have MS) I see emails from many people saying they wish they had never ever taken them because they did more harm long term than good. C Norton wrote: > In my research last night, 10% of MS dxs show negative results from the > spinal tap. What ever that means? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 Not for nothing, but I would sue the crap out of the MD that Dx'd and treated you for MS. I'm am not a pro lawsuit kind of guy most of the time. I've never heard of someone going that long misdiagnosed and mismanaged. To be on immunosuppresants for that long unnecessarily is in my opinion malpractice. I thought the plaque on the MRI or CT was required in order to dx MS. Danny Vaughn vhickman35@...> wrote: , I had a dx of Chronic-Progressive MS for 10 years before I found a neuro who recognized that without plaque on the brain or brainstem, you don't have MS. My 7th & 8th MRI at an MS clinic finally got me a PLS dx. That change got me off of immunosuppressant drugs (Imuran) daily and steroids (1gm IV Solu-medrol)every three weeks. I now take Valium (5mg) three times a day for spasticity. That's it! Vaughn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 Have you tried a 4 wheeled walker instead of the forearm canes. The type with the built in seat and hand brakes. You might find getting around easier. Just a thought. Danny Vaughn vhickman35@...> wrote: , Unfortunately my abilities are far from normal, but not nearly as bad as some. My balance is still shot - I use two fore-arm canes. The few times I use only one (around the house), I find it very difficult to make any adjustment in my direction of travel. I tend to keep going until I find something to put my other hand on, or I just stop and start again. My voice is nasal, but again not nearly as bad as some. If I slow down (not difficult since I'm from TN) and concentrate on diction, most of the time I can make myself understood. The most problem I have is with young people. They all tend to talk quite fast, therefore they think fast. When they hear me, they can't make the adjustment to slow speech. With most older people, I seldom have a problem. My foot drop hasn't changed, particularly if I try to hurry - which for me is a relative term. When I slow down and concentrate on lifting my feet, I tend to do pretty good. I have never had any pain, discounting a charley horse from stretching when I first wake up. A big ol' charley horse in the calf of ones leg sure does make it slow in getting to the floor to press down the front of my foot. I really haven't progressed very much in the last 10 years. In fact, my startle reflex has improved to the point I have started shooting again - guns that is. I can go to the shooting range and the only thing that bothers me is a .44 magnum right beside me. That would make a corpse jump. Good luck on getting a definite dx. I have gone through six neuro's since '96, and am about to change again. I went to my current one last week for the first time in about three years. I only went to try to find someone to test me for a baclofen pump. So far no luck here in Knoxville. Just hang in there, . The name doesn't really matter as long as the symptoms can be treated (improved). Vaughn > RE: MS vs PLS > > In my research last night, 10% of MS dxs show negative > results from the spinal tap. What ever that means? > > Vaughn, may I ask, are your abilities near normal now that > your meds are virtually none? > > Norton Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 I agree with Danny that a walker would be much much better than the crutches. I can only think you would walk really slow with them and they would be so cumbersome. A walker will glide you along easily where ever you want to go. Maureen (Australia) , > > Unfortunately my abilities are far from normal, but not > nearly as bad as some. My balance is still shot - I use two > fore-arm canes. The few times I use only one (around the > house), I find it very difficult to make any adjustment in > my direction of travel. I tend to keep going until I find > something to put my other hand on, or I just stop and start > again. > > My voice is nasal, but again not nearly as bad as some. If I > slow down (not difficult since I'm from TN) and concentrate > on diction, most of the time I can make myself understood. > The most problem I have is with young people. They all tend > to talk quite fast, therefore they think fast. When they > hear me, they can't make the adjustment to slow speech. With > most older people, I seldom have a problem. > > My foot drop hasn't changed, particularly if I try to hurry > - which for me is a relative term. When I slow down and > concentrate on lifting my feet, I tend to do pretty good. > > I have never had any pain, discounting a charley horse from > stretching when I first wake up. A big ol' charley horse in > the calf of ones leg sure does make it slow in getting to > the floor to press down the front of my foot. > > I really haven't progressed very much in the last 10 years. > In fact, my startle reflex has improved to the point I have > started shooting again - guns that is. I can go to the > shooting range and the only thing that bothers me is a .44 > magnum right beside me. That would make a corpse jump. > > Good luck on getting a definite dx. I have gone through six > neuro's since '96, and am about to change again. I went to > my current one last week for the first time in about three > years. I only went to try to find someone to test me for a > baclofen pump. So far no luck here in Knoxville. > > Just hang in there, . The name doesn't really matter as > long as the symptoms can be treated (improved). > > Vaughn > > > RE: MS vs PLS > > > > In my research last night, 10% of MS dxs show negative > > results from the spinal tap. What ever that means? > > > > Vaughn, may I ask, are your abilities near normal now that > > > your meds are virtually none? > > > > Norton > > > Quote Link to comment Share on other sites More sharing options...
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