Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 Larry, Have you ever come across anything showing a link between TMJ and MS? I o have both. Dan ----- Original Message ----- From: LarryGC MSWatchers Cc: Spotlight_LDN; LDN group Sent: 1/22/2004 2:49:10 PM Subject: [low dose naltrexone] Neuro visit today Went to my neuro for my 3 month follow up today. Saw the MS Nurse first. That was exciting. She wrote what she wrote last time, nothing new to say, must be filler so they can make a good claim. Then the neuro came in, asked me how I was doing, checked me out, said I was doing great, said to come back in 4 months instead of 3. I asked him about getting CD4/CD8 tests done, he said he can't order them, they're only covered for HIV patients. Said to just worry about lymphocytes and WBC. I asked him about an MRI, he said he'll consider it when he sees me next time. He seemed more impressed this time, or maybe he was just in a better mood. I told him about my TMJ and hearing loss in my right ear, didn't seem concerned. I told him again about my neck spasm/pain when cold air hits me, didn't seem concerned, didn't offer any ideas. It's a good thing I have my chiropractors or I'd have nobody to discuss these things with. The neuro and his MS nurse only seem to write things down, and that's as far as it goes. Today was a waste of time and a $10 co pay, except for another step in my getting another MRI done. I printed out the new patent from 7/1/2003 so I could read it last night, so I offered them both to look at it, neither seemed to care at all about it. http://patft.uspto.gov/netacgi/nph-Parser?Sect1=PTO1 & Sect2=HITOFF & d=PALL & p=1 & u=/netahtml/srchnum.htm & r=1 & f=G & l=50 & s1=6,586,443.WKU. & OS=PN/6,586,443 & RS=PN/6,586,443 So, the medical community was nice enough to let me have LDN, but they really couldn't care less about it. Every time I ask him questions, I hear "we're not running a trial, you don't need that". He may allow other patients to try LDN, IF THEY ASK HIM, but I am SURE he and his MS Nurse aren't telling or offering it as an option. Business is booming though, his CRAB video tapes are disappearing, and 3 neuros were in seeing patients today. Maybe I should print out business size cards with the LDN website link on it for when I go there and over hear someone has MS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2004 Report Share Posted January 24, 2004 G'day, In the early days of my condition (PLS = primary lateral sclerosis, a form of motor neurone disease) I could find nothing on PLS (pre general internet use) but my neuro told me it was like MS, so I instead did a lot of reading on MS and in one book came across somebody who felt there was a link between the two. That was 10 years ago now but I think it may have been a book called "Journey to Wholeness" by a woman called Barbara Brewster which somebody had lent me. Whatever book it was in the theory was that by working on the TMJ you could lessen the effects of MS (and possibly eliminate them?). I think (and could be totally wrong) that the reasoning was that the TMJ caused problems for the nerves coming through the neck. If you want me to try to find the reference email me and I will go through the books I bought and at least eliminate them, thus increasing the possibility it was Barbara's book. Glines wrote: Larry, Have you ever come across anything showing a link between TMJ and MS? I o have both. Dan -- . ,-._|\ Covington / Oz \ \_,--.x/ v Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2004 Report Share Posted January 25, 2004 , No, I was just wondering if there were any resources on the Internet. It has grown so much in the last 10 years. Based on my experience the theory is correct, but there is no proof only my opinion. Dan ----- Original Message ----- From: C low dose naltrexone Sent: 1/24/2004 11:45:34 PM Subject: Re: [low dose naltrexone] Neuro visit today G'day,In the early days of my condition (PLS = primary lateral sclerosis, a form of motor neurone disease) I could find nothing on PLS (pre general internet use) but my neuro told me it was like MS, so I instead did a lot of reading on MS and in one book came across somebody who felt there was a link between the two. That was 10 years ago now but I think it may have been a book called "Journey to Wholeness" by a woman called Barbara Brewster which somebody had lent me. Whatever book it was in the theory was that by working on the TMJ you could lessen the effects of MS (and possibly eliminate them?). I think (and could be totally wrong) that the reasoning was that the TMJ caused problems for the nerves coming through the neck.If you want me to try to find the reference email me and I will go through the books I bought and at least eliminate them, thus increasing the possibility it was Barbara's book. Glines wrote: Larry, Have you ever come across anything showing a link between TMJ and MS? I o have both. Dan -- . ,-._|\ Covington / Oz \ \_,--.x/ v Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2004 Report Share Posted January 25, 2004 TMJ is a physical condition with the jaw. I think that if you have MS, it just adds a 2nd condition which just complicates matters. If you don't have MS, just TMJ, you get one set of circumstances. If you have MS, the TMJ condition just triggers the MS to enhance and distort the condition. My chiro worked on my TMJ about 10 years ago and I haven't had my jaw snap again, until December. Shortly after Halloween I was chewing gum, I think that may have lead to the snap in December. JMHO of course. ----- Original Message ----- From: Glines low dose naltrexone Sent: Friday, January 23, 2004 09:36 Subject: RE: [low dose naltrexone] Neuro visit today Larry, Have you ever come across anything showing a link between TMJ and MS? I o have both. Dan ----- Original Message ----- From: LarryGC MSWatchers Cc: Spotlight_LDN; LDN group Sent: 1/22/2004 2:49:10 PM Subject: [low dose naltrexone] Neuro visit today Went to my neuro for my 3 month follow up today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 Hi All My Fellow LDNer's,(my hope and lifelines) I visited my neuro today...that's almost always a downer for me.(in line with everyone else's bad day) He confirmed that I am a 6.5 on the EDSS scale. not news to me.He had me start Keppra for the last 2 weeks and all it's done is make me sleepy.Today he said he wants me to try Zanaflex, but he thinks I should go on a baclafen pump. The whole idea of that scares me. He said the amount you get that way is miniscule and won't affect your liver, etc. Does anyone else do that? I'm leaning away from it strongly!I do want to walk without getting so tired. Then he told me that since I'm on a cane, the amount of time till I'm in a wheelchair is approaching fast and the baclafen pump is the only hope to stay out of the"chair". He also said once in the "chair" the pump was useless.He said I'll wish I had done it, when I was still walking. He did say he is VERY excited about Antegren, but its probably a year away. By the way, I'm on 4.5 of LDN for almost 3 mos. with little change. -------Original Message------- From: low dose naltrexone Date: Monday, July 19, 2004 14:53:51 low dose naltrexone Subject: Re: [low dose naltrexone] LOL funny Sara - Thanks Sara, I'm A+ if it makes you feel any better!!! I did get a bang out of your comment!! My day isn't going a whole lot better! Marcie (PPMS) In a message dated 7/19/2004 11:40:14 AM Central Standard Time, allentownusa@... writes: Sara - Thanks for the giggle! As another B+, I so relate to this "deal" we gotten. Think I'll have another glass of iced tea (108 degrees and coffee, what are you thinking?) and sulk right along with you. Cinders ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 , Did the neuro explain just exactly how the bacloffen pump is supposed to help keep you out of a wheelchair?? Or is it just supposed to slow down the progression so that it is a longer amount of time until you are in a chair? I thought baclofen was to ease spasms. A physical therapist once told me that it works by destroying muscle tissue, so eventually you don't have anything to have spasms or pain in, much less nothing to walk on. That's why I ask if he/she explained how it works to keep you out of a wheelchair. A neuro told me about it 5 years ago. I wasn't comfortable with what I learned, so I chose not to. I had just gotten in the chair. She never indicated that it would really do anything except relieve spasms and pain. She's the one doing all of the Keppra research now. I'm on Keppra now, but I'm not claiming that it is doing wonderful things. Maybe a little relief from back spasms. Maybe. Marcie (PPMS) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 , I can only imagine the fear that this man has placed on this poor woman. She definately needs to stay away from him! It's bad enough just to try inform yourself by reading what a reputable source prints. This is scary stuff! I was in the restroom at Walmart recently when a lady asked me what a pretty woman like me was doing in a wheelchair! (I know she didn't mean it the way it sounded), but I thought about asking her if only unattractive people were supposed to be in wheelchairs! I'm so sensitive that I just started crying. Then she wanted to know if it was a permanent condition and if I had a relationship with the Lord! I told her it was MS and yes, I knew the Lord, but it really didn't seem to change anything. You know the old saying, "I'd rather keep my mouth shut and be thought a fool than to open it and remove all doubt!" I'm really not too bitter, but I just don't want to discuss my personal life with a stranger in the restroom at Walmart! We are only inspiration to able-bodied people when they are in our presence. After that, their lives go on, thank God! I wouldn't wish this on anyone. In a nutshell, dealing with people with good intentions can be very hard! Marcie (PPMS) \ In a message dated 7/19/2004 9:33:01 PM Central Standard Time, cindyyoung@... writes: , I think the neuro's think it's their obligation to not give you false hope. As I was walking out of the Dr.'s office today, a lady stopped me and asked me, with tears in her eyes, if I had ms. I answered yes. She told me that she was dxed a couple of months ago and a co-worker of hers was scaring her. He told her that black folks don't usually get ms and since she got ms and is black she probably had a horrible case and would be in a wheelchair soon and be blind AND unable to talk.I told her to stay away from him and if he comes around her to tell him to bugger off!I can't believe there are people that mean. She is so frightened, poor soul. ____________________________________________________ ðäÆ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 Thats not so strange as that is also when I walk best even without a cane! I can (for a few short moments) go from a 6.5 to a 6 on the EDSS around ten thirty or eleven P.M. This happens quite a lot actually, it seems the longer I stay at 3.0 mgs the more things improve. I have heard others claim the same. Reg. o+ -------Original Message------- From: low dose naltrexone Date: 07/19/04 21:16:38 low dose naltrexone Subject: Re: [low dose naltrexone] neuro visit today Reg, I did try the pills first. They made me sleepy and didn't help me walk any better. I always walk better in the evenings....strange, huh? I'm convinced... NO BACLOFEN!! -------Original Message------- From: low dose naltrexone Date: Monday, July 19, 2004 18:03:58 low dose naltrexone Subject: Re: [low dose naltrexone] neuro visit today Have you tried the Baclofen pills yet? My Nuero gave me a prescription for twenty mgs twice daily,and I thought that was very miniscule, yet my body rejected the product very badly I almost wasn't walking at all on my third day of this fourty mgs a day thing. I meant to scare you as my brother hasn't walked since being on Baclofen.We are both on 3.0mgs of LDN. now for ten months and not getting any worse fast. But also not really getting any better now that the initial buzz has subsided. Can you imagine how you would feel if you went for the pump (which is sugically implanted )and then you found out you can't handle it? Reg. -------Original Message------- From: low dose naltrexone Date: 07/19/04 14:23:50 low dose naltrexone Subject: Re: [low dose naltrexone] neuro visit today Hi All My Fellow LDNer's,(my hope and lifelines) I visited my neuro today...that's almost always a downer for me.(in line with everyone else's bad day) He confirmed that I am a 6.5 on the EDSS scale. not news to me.He had me start Keppra for the last 2 weeks and all it's done is make me sleepy.Today he said he wants me to try Zanaflex, but he thinks I should go on a baclafen pump. The whole idea of that scares me. He said the amount you get that way is miniscule and won't affect your liver, etc. Does anyone else do that? I'm leaning away from it strongly!I do want to walk without getting so tired. Then he told me that since I'm on a cane, the amount of time till I'm in a wheelchair is approaching fast and the baclafen pump is the only hope to stay out of the"chair". He also said once in the "chair" the pump was useless.He said I'll wish I had done it, when I was still walking. He did say he is VERY excited about Antegren, but its probably a year away. By the way, I'm on 4.5 of LDN for almost 3 mos. with little change. -------Original Message------- From: low dose naltrexone Date: Monday, July 19, 2004 14:53:51 low dose naltrexone Subject: Re: [low dose naltrexone] LOL funny Sara - Thanks Sara, I'm A+ if it makes you feel any better!!! I did get a bang out of your comment!! My day isn't going a whole lot better! Marcie (PPMS) In a message dated 7/19/2004 11:40:14 AM Central Standard Time, allentownusa@... writes: Sara - Thanks for the giggle! As another B+, I so relate to this "deal" we gotten. Think I'll have another glass of iced tea (108 degrees and coffee, what are you thinking?) and sulk right along with you. Cinders ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 I've seen other posts saying they walk better around 9 to 11pm. I experience the same thing!!! It's really strange. You all seem to be on different meds and doing different things, but I wonder if there is a common link some where?Reg Kreil <regkreil@...> wrote: Thats not so strange as that is also when I walk best even without a cane! I can (for a few short moments) go from a 6.5 to a 6 on the EDSS around ten thirty or eleven P.M. This happens quite a lot actually, it seems the longer I stay at 3.0 mgs the more things improve. I have heard others claim the same. Reg. o+ -------Original Message------- From: low dose naltrexone Date: 07/19/04 21:16:38 low dose naltrexone Subject: Re: [low dose naltrexone] neuro visit today Reg, I did try the pills first. They made me sleepy and didn't help me walk any better. I always walk better in the evenings....strange, huh? I'm convinced... NO BACLOFEN!! -------Original Message------- From: low dose naltrexone Date: Monday, July 19, 2004 18:03:58 low dose naltrexone Subject: Re: [low dose naltrexone] neuro visit today Have you tried the Baclofen pills yet? My Nuero gave me a prescription for twenty mgs twice daily,and I thought that was very miniscule, yet my body rejected the product very badly I almost wasn't walking at all on my third day of this fourty mgs a day thing. I meant to scare you as my brother hasn't walked since being on Baclofen.We are both on 3.0mgs of LDN. now for ten months and not getting any worse fast. But also not really getting any better now that the initial buzz has subsided. Can you imagine how you would feel if you went for the pump (which is sugically implanted )and then you found out you can't handle it? Reg. -------Original Message------- From: low dose naltrexone Date: 07/19/04 14:23:50 low dose naltrexone Subject: Re: [low dose naltrexone] neuro visit today Hi All My Fellow LDNer's,(my hope and lifelines) I visited my neuro today...that's almost always a downer for me.(in line with everyone else's bad day) He confirmed that I am a 6.5 on the EDSS scale. not news to me.He had me start Keppra for the last 2 weeks and all it's done is make me sleepy.Today he said he wants me to try Zanaflex, but he thinks I should go on a baclafen pump. The whole idea of that scares me. He said the amount you get that way is miniscule and won't affect your liver, etc. Does anyone else do that? I'm leaning away from it strongly!I do want to walk without getting so tired. Then he told me that since I'm on a cane, the amount of time till I'm in a wheelchair is approaching fast and the baclafen pump is the only hope to stay out of the"chair". He also said once in the "chair" the pump was useless.He said I'll wish I had done it, when I was still walking. He did say he is VERY excited about Antegren, but its probably a year away. By the way, I'm on 4.5 of LDN for almost 3 mos. with little change. -------Original Message------- From: low dose naltrexone Date: Monday, July 19, 2004 14:53:51 low dose naltrexone Subject: Re: [low dose naltrexone] LOL funny Sara - Thanks Sara, I'm A+ if it makes you feel any better!!! I did get a bang out of your comment!! My day isn't going a whole lot better! Marcie (PPMS) In a message dated 7/19/2004 11:40:14 AM Central Standard Time, allentownusa@... writes: Sara - Thanks for the giggle! As another B+, I so relate to this "deal" we gotten. Think I'll have another glass of iced tea (108 degrees and coffee, what are you thinking?) and sulk right along with you. Cinders ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 I'm another of those who feel better late in the evening, unfortunately if I stay up to take advantage of feeling better I feel really lousy the next day. I'd sure like to know what that's all about so we could maybe re-create the condition earlier in the day... ----- Original Message ----- From: Roy low dose naltrexone Sent: Tuesday, July 20, 2004 10:02 AM Subject: Re: [low dose naltrexone] neuro visit today I've seen other posts saying they walk better around 9 to 11pm. I experience the same thing!!! It's really strange. You all seem to be on different meds and doing different things, but I wonder if there is a common link some where? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 What is so strange is that I was allways so energetic until M.S. came along then poof out of energy-out of luck. So when late at night (remember I get up at six A.M. most days) Like 11:00, I can walk almost normally I am amazed. Yes it would be nice to get this boost at say 8:00 A.M. and then keep it a little bit longer each day! I know of one common link We All Take L.D.N. Reg. -------Original Message------- different meds and doing different things, but I wonder if there is a common link some where? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 Reg, My hypothesis as to why we can walk better in the evening is ENDORFINS! Don't we take our ldn in the evening to boost the natural time we make endorfins?What say you, Aegis, the learned one?Does this theory hold water or not? Now, like you say Reg, if we could only trigger this effect at 8 am! I like this pretty blue page -------Original Message------- From: low dose naltrexone Date: Tuesday, July 20, 2004 15:04:54 low dose naltrexone Subject: Re: [low dose naltrexone] neuro visit today What is so strange is that I was allways so energetic until M.S. came along then poof out of energy-out of luck. So when late at night (remember I get up at six A.M. most days) Like 11:00, I can walk almost normally I am amazed. Yes it would be nice to get this boost at say 8:00 A.M. and then keep it a little bit longer each day! I know of one common link We All Take L.D.N. Reg. -------Original Message------- different meds and doing different things, but I wonder if there is a common link some where? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 Marcie, He said it would help me walk better, therefore delaying the wheelchair.He felt the spasms and stiffness was impairing my walking. His theory...not mine. I tried the Keppra, but I couldn't stay awake on it.He wrote me a scrip for Zanaflex. He said if that doesn't help my walking, then try the "pump". I say if the zanaflex doesn't work, dump the neuro! I'm still holding out hope that fixing my root canals will bring some healing.My appointment isn't for another 8 days though. Marcie, you are in TX aren't you?Is this heat getting to you? The one great thing my neuro did for me was write me a scrip for therapeutic massages. -------Original Message------- From: low dose naltrexone Date: Tuesday, July 20, 2004 09:57:17 low dose naltrexone Subject: Re: [low dose naltrexone] neuro visit today , Did the neuro explain just exactly how the bacloffen pump is supposed to help keep you out of a wheelchair?? Or is it just supposed to slow down the progression so that it is a longer amount of time until you are in a chair? I thought baclofen was to ease spasms. A physical therapist once told me that it works by destroying muscle tissue, so eventually you don't have anything to have spasms or pain in, much less nothing to walk on. That's why I ask if he/she explained how it works to keep you out of a wheelchair. A neuro told me about it 5 years ago. I wasn't comfortable with what I learned, so I chose not to. I had just gotten in the chair. She never indicated that it would really do anything except relieve spasms and pain. She's the one doing all of the Keppra research now. I'm on Keppra now, but I'm not claiming that it is doing wonderful things. Maybe a little relief from back spasms. Maybe. Marcie (PPMS) ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 But the endorphins are made in the early morning...right. So therefore we have used them up by that time of the evening..or do we use up endorphins? This train of thought tells me that maybe too many were built for me and only when some have gone away do I do better. I don't know......... Reg. I can read the writing better on this blue paper -------Original Message------- From: low dose naltrexone Date: 07/20/04 14:31:29 low dose naltrexone Subject: Re: [low dose naltrexone] neuro visit today Reg, My hypothesis as to why we can walk better in the evening is ENDORFINS! Don't we take our ldn in the evening to boost the natural time we make endorfins?What say you, Aegis, the learned one?Does this theory hold water or not? Now, like you say Reg, if we could only trigger this effect at 8 am! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 What you are referring to is called diurnal variation, diurnal meaning " about the day " . It is a complicated issue as many metabolic functions vary in intensity at certain times about the day. For instance, the body produces the greatest amount of cholesteral during the late evening. If you can establish exactly which substance is being produced at a greater level late in the evening, then you are definitely on to something. good luck, Dr. S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 Gee, if there was a cholesterol connection I could justify eating lots of bacon first am... Kidding aside, does anyone know what changes occur in the late evening? We should be producing melatonin to begin our sleep cycles, but many of us don't do well in that department. I wonder what else goes on then... JT ----- Original Message ----- From: Dr. RLS low dose naltrexone Sent: Tuesday, July 20, 2004 2:41 PM Subject: Re: [low dose naltrexone] neuro visit today What you are referring to is called diurnal variation, diurnal meaning "about the day". It is a complicated issue as many metabolic functions vary in intensity at certain times about the day. For instance, the body produces the greatest amount of cholesteral during the late evening. If you can establish exactly which substance is being produced at a greater level late in the evening, then you are definitely on to something. good luck, Dr. S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 Marie, I'm right there with you! One time I had a woman who I have known for most of my life (but not too close) ask me what I'm able to do! Well, I had never thought about it from that perspective, and I was stunned by the question. My mother was there, and bless her heart ( the Southern way of saying 'Go to Hell') stepped in for me and said, "Well, she can fold laundry." (My mother is not known for her sensitivity!) In a moment I was reduced from my Police Dispatching, EMT/Intermidiate level (Started IVs...,account manager for a large PPO network to the minial task of folding laundry! My own mother doesn't realize that life goes on whether or not the laundry gets folded. In the beginning, I would be in the grocery store in my wheelchair (that was tough), and people would approach me with tears in their eyes and say, "I talked to your Momma." Then I'd start crying and have to leave the store! Then I asked my mother to please tell people that I'm doing good or fine or something like that. She said that she couldn't do that because it would be lying, and if I didn't want people to know how I was then maybe I didn't need to go out in public! Needless to say, my visits with her are infrequent and she gets NO details! That's right! My own mother! Some people just need to be avoided. This life is hard enough. I do attribute LDN with giving me a better sense of well being, and that's a good thing! Marcie (PPMS) PS - I high centered in my power wheelchair out in the hot West Texas sun this afternoon! Took about 15 minutes for someone to get here and help me out of my predicament! It was 3:30 P.M. and the sun was intense. LDN has certainly helped my heat tolerance because last summer I would have had to go right to bed! I was just trying to water my darned tomato plant! Much longer and I would have had to wave down a trucker to rescue me! (There's a gravel plant at the end of the road I live on, so trucks are running all day) In a message dated 7/21/2004 1:26:02 PM Central Standard Time, Mardea@... writes: I can't beleive how many strangers that I have run into that think that it is their business to know what is wrong with me. I would NEVER ask a stranger what is wrong with them Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 I can't beleive how many strangers that I have run into that think that it is their business to know what is wrong with me. I would NEVER ask a stranger what is wrong with them Marie ----- Original Message ----- From: marciemjm@... low dose naltrexone Sent: Tuesday, July 20, 2004 11:32 AM Subject: Re: [low dose naltrexone] neuro visit today , I can only imagine the fear that this man has placed on this poor woman. She definately needs to stay away from him! It's bad enough just to try inform yourself by reading what a reputable source prints. This is scary stuff! I was in the restroom at Walmart recently when a lady asked me what a pretty woman like me was doing in a wheelchair! (I know she didn't mean it the way it sounded), but I thought about asking her if only unattractive people were supposed to be in wheelchairs! I'm so sensitive that I just started crying. Then she wanted to know if it was a permanent condition and if I had a relationship with the Lord! I told her it was MS and yes, I knew the Lord, but it really didn't seem to change anything. You know the old saying, "I'd rather keep my mouth shut and be thought a fool than to open it and remove all doubt!" I'm really not too bitter, but I just don't want to discuss my personal life with a stranger in the restroom at Walmart! We are only inspiration to able-bodied people when they are in our presence. After that, their lives go on, thank God! I wouldn't wish this on anyone. In a nutshell, dealing with people with good intentions can be very hard! Marcie (PPMS) \ In a message dated 7/19/2004 9:33:01 PM Central Standard Time, cindyyoung@... writes: , I think the neuro's think it's their obligation to not give you false hope. As I was walking out of the Dr.'s office today, a lady stopped me and asked me, with tears in her eyes, if I had ms. I answered yes. She told me that she was dxed a couple of months ago and a co-worker of hers was scaring her. He told her that black folks don't usually get ms and since she got ms and is black she probably had a horrible case and would be in a wheelchair soon and be blind AND unable to talk.I told her to stay away from him and if he comes around her to tell him to bugger off!I can't believe there are people that mean. She is so frightened, poor soul. ____________________________________________________ ðäÆ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2004 Report Share Posted July 22, 2004 Marcie, Thanks for you story. Reading about your mother, I have to mention my dear ole mom. My mother and I both have MS (mmm and they say it's not genetic) unfortunately my mom is waiting for the pill you pop and suddenly your cured! Because she doesn't believe in supplements, the right foods, certainly not ldn, she finds herself in horrible shape. . . now ppms and in a scooter permanently. After having ms for over 20 years and doing everything I can, I find myself in pretty good shape. I'm still walking and with ldn, there is little I can't do. The real sad part of this story is I can't help my own mother. I was so excited when I found ldn 6 months ago and she wants no part of it!! I've come to learn you can lead a horse to water but they still might die of thirst I still love her dearly but it breaks my heart to watch her progress with the MS monster. From: marciemjm@... [mailto:marciemjm@...] Sent: Wednesday, July 21, 2004 7:10 PMlow dose naltrexone Subject: Re: [low dose naltrexone] neuro visit today Marie, I'm right there with you! One time I had a woman who I have known for most of my life (but not too close) ask me what I'm able to do! Well, I had never thought about it from that perspective, and I was stunned by the question. My mother was there, and bless her heart ( the Southern way of saying 'Go to Hell') stepped in for me and said, "Well, she can fold laundry." (My mother is not known for her sensitivity!) In a moment I was reduced from my Police Dispatching, EMT/Intermidiate level (Started IVs...,account manager for a large PPO network to the minial task of folding laundry! My own mother doesn't realize that life goes on whether or not the laundry gets folded. In the beginning, I would be in the grocery store in my wheelchair (that was tough), and people would approach me with tears in their eyes and say, "I talked to your Momma." Then I'd start crying and have to leave the store! Then I asked my mother to pleas! e tell people that I'm doing good or fine or something like that. She said that she couldn't do that because it would be lying, and if I didn't want people to know how I was then maybe I didn't need to go out in public! Needless to say, my visits with her are infrequent and she gets NO details! That's right! My own mother! Some people just need to be avoided. This life is hard enough. I do attribute LDN with giving me a better sense of well being, and that's a good thing! Marcie (PPMS) PS - I high centered in my power wheelchair out in the hot West Texas sun this afternoon! Took about 15 minutes for someone to get here and help me out of my predicament! It was 3:30 P.M. and the sun was intense. LDN has certainly helped my heat tolerance because last summer I would have had to go right to bed! I was just trying to water my darned tomato plant! Much longer and I would have had to wave down a trucker to rescue me! (There's a gravel plant at the end of the road I live on, so trucks are running all day) In a message dated 7/21/2004 1:26:02 PM Central Standard Time, Mardea@... writes: I can't beleive how many strangers that I have run into that think that it is their business to know what is wrong with me. I would NEVER ask a stranger what is wrong with them Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2004 Report Share Posted July 23, 2004 My heart goes out to you . I hope that your Mother will see how great that you are doing and decide to try it herself. I have known a few people like that. They just don't want to be bothered trying it. How sad. I will fight till the end. Maybe she needs some prayers to help her. There isn't a lot that you can do unless she wants to be helped herself. Good Luck Marie ----- Original Message ----- From: Baden low dose naltrexone Sent: Thursday, July 22, 2004 8:50 AM Subject: RE: [low dose naltrexone] neuro visit today Marcie, Thanks for you story. Reading about your mother, I have to mention my dear ole mom. My mother and I both have MS (mmm and they say it's not genetic) unfortunately my mom is waiting for the pill you pop and suddenly your cured! Because she doesn't believe in supplements, the right foods, certainly not ldn, she finds herself in horrible shape. . . now ppms and in a scooter permanently. After having ms for over 20 years and doing everything I can, I find myself in pretty good shape. I'm still walking and with ldn, there is little I can't do. The real sad part of this story is I can't help my own mother. I was so excited when I found ldn 6 months ago and she wants no part of it!! I've come to learn you can lead a horse to water but they still might die of thirst I still love her dearly but it breaks my heart to watch her progress with the MS monster. From: marciemjm@... [mailto:marciemjm@...] Sent: Wednesday, July 21, 2004 7:10 PMlow dose naltrexone Subject: Re: [low dose naltrexone] neuro visit today Marie, I'm right there with you! One time I had a woman who I have known for most of my life (but not too close) ask me what I'm able to do! Well, I had never thought about it from that perspective, and I was stunned by the question. My mother was there, and bless her heart ( the Southern way of saying 'Go to Hell') stepped in for me and said, "Well, she can fold laundry." (My mother is not known for her sensitivity!) In a moment I was reduced from my Police Dispatching, EMT/Intermidiate level (Started IVs...,account manager for a large PPO network to the minial task of folding laundry! My own mother doesn't realize that life goes on whether or not the laundry gets folded. In the beginning, I would be in the grocery store in my wheelchair (that was tough), and people would approach me with tears in their eyes and say, "I talked to your Momma." Then I'd start crying and have to leave the store! Then I asked my mother to pleas! e tell people that I'm doing good or fine or something like that. She said that she couldn't do that because it would be lying, and if I didn't want people to know how I was then maybe I didn't need to go out in public! Needless to say, my visits with her are infrequent and she gets NO details! That's right! My own mother! Some people just need to be avoided. This life is hard enough. I do attribute LDN with giving me a better sense of well being, and that's a good thing! Marcie (PPMS) PS - I high centered in my power wheelchair out in the hot West Texas sun this afternoon! Took about 15 minutes for someone to get here and help me out of my predicament! It was 3:30 P.M. and the sun was intense. LDN has certainly helped my heat tolerance because last summer I would have had to go right to bed! I was just trying to water my darned tomato plant! Much longer and I would have had to wave down a trucker to rescue me! (There's a gravel plant at the end of the road I live on, so trucks are running all day) In a message dated 7/21/2004 1:26:02 PM Central Standard Time, Mardea@... writes: I can't beleive how many strangers that I have run into that think that it is their business to know what is wrong with me. I would NEVER ask a stranger what is wrong with them Marie Quote Link to comment Share on other sites More sharing options...
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