Guest guest Posted July 10, 2012 Report Share Posted July 10, 2012 I am so glad to have found this list. On other lists for MS everyone kind of assumes you need to be on drugs for MS. I am older and have had huge drug sensitivities all my life. Been so scared to go to a neurologist even, as they so push drugs, and everyone seems to assume you need to use the drugs. My husband had a brain tumor and surgery for it, and the neurologists really messed him up. When he quit the neurological drugs etc. he started to improve. They were horrid drugs. I have had the MS since my early 30s and have never been diagnosed. Now am afraid to go to the neurologist (have ruled out brain tumors etcwith Cat scans) It is classic MS really – I know that at this point, but am afraid to go to a neurologist for a diagnosis. Can’t someone just diagnose it from advanced symptoms as mine and call it probable MS? The people on the drugs just seem like they are tortured on them and I am doing better than most of my age ,just with alternative things all these year. Magnesium and potassium for the spasms etc. and diet - a lot of foods seem to set it off. I can’t just do what the Dr. says and trust him as the Drs. have no understanding of my symptoms and special needs and they get me so sick. I have had to back away from them. I feel guilty not going for diagnosis. Actually I have not been doing too bad on my own. I did medical research etc earlier in my life, (experimental psychology) so can figure out a lot on my own. Has been safer. Any thoughts? Diane in WA The good neurologists are few and far between. I have been through 5 and looking for the 6th. They are taught that drugs are the only answer and it’s just pathetic how they don’t even discuss nutrition, diet, physical therapy, etc. You have to practically pull everything out of them and none of them have the time to deal with your problems. If I wasn't a nurse and didn’t know better, I would have been on those nasty meds too. You basically do what the doctor tells you and trust him. It’s just sad. From: mailto:saqqaraby1%40kc.rr.com Sent: Tuesday, July 10, 2012 11:26 AM To: mailto:mscured%40yahoogroups.com Subject: Re: Re: Rebif/ and Paleo diet I ended up on rebif first thing also. Sent home with a stack of books half as tall as me with less than 2 weeks to look at the stuff. Working 60-70 hour weeks at the time. I was not given the opportunity to do the research required for a valid choice. Less than 3 months later I lost use of my hands (among other symptoms) and was terminated by my employer because I became disabled. Checking into new neurologists and was told by 1 that rebif should not even be offered after a first attack. The new guy may be ok, I hope. I have been desperately seeking a competent neurologist for nearly 7 years. I did not choose the first guy and in order to change I would have needed to find a new office and convince the pc to give a referral. One thing, I am done with the first jerk and am considering a report to the ama. Valery At 11:39 AM 7/10/2012, you wrote: > > > > >I'm another one who was basically frightened by >the neuro into using Rebif shortly after >diagnosis. I could only tolerate it for 7 >months, partly due to the side effects, and >also, I think it caused a rapid worsening of my symptoms. > >I'm currently exploring the whole Paleo >paradigm, and have found some people whose MS >symptoms have much improved with it. Here's an example: > ><http://www.nutrisclerosis.com/>http://www.nutrisclerosis.com/ > >With Paleo eating, you want to definitely eat >meats, but avoid meats that contain any hormones >or antibiotics, and also avoid animals that were >grain fed. So, we're looking for grass fed beef, wild fish, etc. > >In addition to avoiding grains, dairy, sugar, >etc., it is suggested that people with >autoimmune illnesses avoid additional food >types, such as nuts and seeds, eggs, nightshade >plants, and others. It certainly doesn't look easy! > >Alice > > > > > > > > Boy does this bring back memories! I had my entire house set up so that > > > I could grab onto something from the couch to the bathroom. I even had > > > bookshelves back to back in the middle of a room. > > > > > > I have been on a LONG journey just like everyone on here. Right now, I > > > am totally off meds, no gadget to help me get around, I can slip my > > > shoes on while standing on one leg. I was dx in 2005 and have gone from > > > wheelchair bound to being able to do a lot of things. This doesn't mean > > > I dont have other problems though. > > > > > > I truly believe the rebif and other meds has caused my body to turn > > > against itself. That doesn't mean it is so but I do know, my outcomes > > > are much higher using natural methods. I have thyroidtoxicosis, > > > diabetes, high blood pressure and severe gastro-intestinal issues that > > > have yet to be diagnosed - oh and let's not forget the narcolepsy > > > (sleeping disease). > > > > > > I believe the poster who mentioned diet and repairing is totally > > > correct, fix the problem, don't add more problems to fix another > > > problem. I am starting the McDougall Diet... its a slow process to get > > > off of meat and dairy but I am off dairy and now am working toward > > > getting totally off of meat. I will let you know if I have a good > > > outcome, I am going to give it a year and hopefully keep my thyroid! > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2012 Report Share Posted July 10, 2012 Hi Diane, I am with you. I hate going to the neuro or any doc for that matter, but if u go get a diagnosis, you can refuse the drugs. You don’t have to take them if u don’t want too. But with a dx. you can then apply for disability if you need it and get other advantages because u have a disability. They will probably do an MRI and want to do a spinal tap. I would not recommend the spinal tap. The recovery is miserable. But if u have the plaques in your brain and symptoms they can dx. it from that. binkie From: DIane Rauch Sent: Tuesday, July 10, 2012 2:23 PM To: mscured Subject: Re: alternative vrs drugs I am so glad to have found this list. On other lists for MS everyone kind of assumes you need to be on drugs for MS. I am older and have had huge drug sensitivities all my life. Been so scared to go to a neurologist even, as they so push drugs, and everyone seems to assume you need to use the drugs. My husband had a brain tumor and surgery for it, and the neurologists really messed him up. When he quit the neurological drugs etc. he started to improve. They were horrid drugs. I have had the MS since my early 30s and have never been diagnosed. Now am afraid to go to the neurologist (have ruled out brain tumors etcwith Cat scans) It is classic MS really – I know that at this point, but am afraid to go to a neurologist for a diagnosis. Can’t someone just diagnose it from advanced symptoms as mine and call it probable MS? The people on the drugs just seem like they are tortured on them and I am doing better than most of my age ,just with alternative things all these year. Magnesium and potassium for the spasms etc. and diet - a lot of foods seem to set it off. I can’t just do what the Dr. says and trust him as the Drs. have no understanding of my symptoms and special needs and they get me so sick. I have had to back away from them. I feel guilty not going for diagnosis. Actually I have not been doing too bad on my own. I did medical research etc earlier in my life, (experimental psychology) so can figure out a lot on my own. Has been safer. Any thoughts? Diane in WA The good neurologists are few and far between. I have been through 5 and looking for the 6th. They are taught that drugs are the only answer and it’s just pathetic how they don’t even discuss nutrition, diet, physical therapy, etc. You have to practically pull everything out of them and none of them have the time to deal with your problems. If I wasn't a nurse and didn’t know better, I would have been on those nasty meds too. You basically do what the doctor tells you and trust him. It’s just sad. From: mailto:saqqaraby1%40kc.rr.com Sent: Tuesday, July 10, 2012 11:26 AM To: mailto:mscured%40yahoogroups.com Subject: Re: Re: Rebif/ and Paleo diet I ended up on rebif first thing also. Sent home with a stack of books half as tall as me with less than 2 weeks to look at the stuff. Working 60-70 hour weeks at the time. I was not given the opportunity to do the research required for a valid choice. Less than 3 months later I lost use of my hands (among other symptoms) and was terminated by my employer because I became disabled. Checking into new neurologists and was told by 1 that rebif should not even be offered after a first attack. The new guy may be ok, I hope. I have been desperately seeking a competent neurologist for nearly 7 years. I did not choose the first guy and in order to change I would have needed to find a new office and convince the pc to give a referral. One thing, I am done with the first jerk and am considering a report to the ama. Valery At 11:39 AM 7/10/2012, you wrote: > > > > >I'm another one who was basically frightened by >the neuro into using Rebif shortly after >diagnosis. I could only tolerate it for 7 >months, partly due to the side effects, and >also, I think it caused a rapid worsening of my symptoms. > >I'm currently exploring the whole Paleo >paradigm, and have found some people whose MS >symptoms have much improved with it. Here's an example: > ><http://www.nutrisclerosis.com/>http://www.nutrisclerosis.com/ > >With Paleo eating, you want to definitely eat >meats, but avoid meats that contain any hormones >or antibiotics, and also avoid animals that were >grain fed. So, we're looking for grass fed beef, wild fish, etc. > >In addition to avoiding grains, dairy, sugar, >etc., it is suggested that people with >autoimmune illnesses avoid additional food >types, such as nuts and seeds, eggs, nightshade >plants, and others. It certainly doesn't look easy! > >Alice > > > > > > > > Boy does this bring back memories! I had my entire house set up so that > > > I could grab onto something from the couch to the bathroom. I even had > > > bookshelves back to back in the middle of a room. > > > > > > I have been on a LONG journey just like everyone on here. Right now, I > > > am totally off meds, no gadget to help me get around, I can slip my > > > shoes on while standing on one leg. I was dx in 2005 and have gone from > > > wheelchair bound to being able to do a lot of things. This doesn't mean > > > I dont have other problems though. > > > > > > I truly believe the rebif and other meds has caused my body to turn > > > against itself. That doesn't mean it is so but I do know, my outcomes > > > are much higher using natural methods. I have thyroidtoxicosis, > > > diabetes, high blood pressure and severe gastro-intestinal issues that > > > have yet to be diagnosed - oh and let's not forget the narcolepsy > > > (sleeping disease). > > > > > > I believe the poster who mentioned diet and repairing is totally > > > correct, fix the problem, don't add more problems to fix another > > > problem. I am starting the McDougall Diet... its a slow process to get > > > off of meat and dairy but I am off dairy and now am working toward > > > getting totally off of meat. I will let you know if I have a good > > > outcome, I am going to give it a year and hopefully keep my thyroid! > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2012 Report Share Posted July 10, 2012 Well my problem is my age and I am not well right now. Have menieres disease and I think the MRI would make me go into a bad spell of that. Sounds drive me up a wall – have to flee and lose my hearing from them sometimes or vomit. A spinal tap is absolutely out of the question at this age and sick , not an option I can allow. My problem I was in the hospital for a fall and tests make me so sick and they never could draw blood and could not even get an IV in at all. Was doubled up in horrid pain from the tests, and that was with a concussion. It took me a year to get use of my arm back that they damaged in the test. I really have lost trust in medicine and feel that at this age they might injure me in the tests again, or set me way back and for what really. I bought my own wheel chair and am too old to get disability. I just keep thinking what is the goal of the grueling dx process at this age. Have even heard Drs won’t dx over 65. some it takes years to get a conclusive diagnosis. I don’t have that time. I have been tortured all my life by Drs. so am thinking I have just had it with them. May change my mind though someday, but if one does not want to use the drugs and can’t get disability (Have medicare which helps with costs). Are there other advantages of the dx that I am missing? It has to be worth the price I’d pay for that physically. Sure can see your point though if one is younger! Diane From: Barb Gajek Sent: Tuesday, July 10, 2012 4:31 PM To: mscured Subject: Re: alternative vrs drugs Hi Diane, I am with you. I hate going to the neuro or any doc for that matter, but if u go get a diagnosis, you can refuse the drugs. You don’t have to take them if u don’t want too. But with a dx. you can then apply for disability if you need it and get other advantages because u have a disability. They will probably do an MRI and want to do a spinal tap. I would not recommend the spinal tap. The recovery is miserable. But if u have the plaques in your brain and symptoms they can dx. it from that. binkie From: DIane Rauch Sent: Tuesday, July 10, 2012 2:23 PM To: mailto:mscured%40yahoogroups.com Subject: Re: alternative vrs drugs I am so glad to have found this list. On other lists for MS everyone kind of assumes you need to be on drugs for MS. I am older and have had huge drug sensitivities all my life. Been so scared to go to a neurologist even, as they so push drugs, and everyone seems to assume you need to use the drugs. My husband had a brain tumor and surgery for it, and the neurologists really messed him up. When he quit the neurological drugs etc. he started to improve. They were horrid drugs. I have had the MS since my early 30s and have never been diagnosed. Now am afraid to go to the neurologist (have ruled out brain tumors etcwith Cat scans) It is classic MS really – I know that at this point, but am afraid to go to a neurologist for a diagnosis. Can’t someone just diagnose it from advanced symptoms as mine and call it probable MS? The people on the drugs just seem like they are tortured on them and I am doing better than most of my age ,just with alternative things all these year. Magnesium and potassium for the spasms etc. and diet - a lot of foods seem to set it off. I can’t just do what the Dr. says and trust him as the Drs. have no understanding of my symptoms and special needs and they get me so sick. I have had to back away from them. I feel guilty not going for diagnosis. Actually I have not been doing too bad on my own. I did medical research etc earlier in my life, (experimental psychology) so can figure out a lot on my own. Has been safer. Any thoughts? Diane in WA The good neurologists are few and far between. I have been through 5 and looking for the 6th. They are taught that drugs are the only answer and it’s just pathetic how they don’t even discuss nutrition, diet, physical therapy, etc. You have to practically pull everything out of them and none of them have the time to deal with your problems. If I wasn't a nurse and didn’t know better, I would have been on those nasty meds too. You basically do what the doctor tells you and trust him. It’s just sad. From: mailto:saqqaraby1%40kc.rr.com Sent: Tuesday, July 10, 2012 11:26 AM To: mailto:mscured%40yahoogroups.com Subject: Re: Re: Rebif/ and Paleo diet I ended up on rebif first thing also. Sent home with a stack of books half as tall as me with less than 2 weeks to look at the stuff. Working 60-70 hour weeks at the time. I was not given the opportunity to do the research required for a valid choice. Less than 3 months later I lost use of my hands (among other symptoms) and was terminated by my employer because I became disabled. Checking into new neurologists and was told by 1 that rebif should not even be offered after a first attack. The new guy may be ok, I hope. I have been desperately seeking a competent neurologist for nearly 7 years. I did not choose the first guy and in order to change I would have needed to find a new office and convince the pc to give a referral. One thing, I am done with the first jerk and am considering a report to the ama. Valery At 11:39 AM 7/10/2012, you wrote: > > > > >I'm another one who was basically frightened by >the neuro into using Rebif shortly after >diagnosis. I could only tolerate it for 7 >months, partly due to the side effects, and >also, I think it caused a rapid worsening of my symptoms. > >I'm currently exploring the whole Paleo >paradigm, and have found some people whose MS >symptoms have much improved with it. Here's an example: > ><http://www.nutrisclerosis.com/>http://www.nutrisclerosis.com/ > >With Paleo eating, you want to definitely eat >meats, but avoid meats that contain any hormones >or antibiotics, and also avoid animals that were >grain fed. So, we're looking for grass fed beef, wild fish, etc. > >In addition to avoiding grains, dairy, sugar, >etc., it is suggested that people with >autoimmune illnesses avoid additional food >types, such as nuts and seeds, eggs, nightshade >plants, and others. It certainly doesn't look easy! > >Alice > > > > > > > > Boy does this bring back memories! I had my entire house set up so that > > > I could grab onto something from the couch to the bathroom. I even had > > > bookshelves back to back in the middle of a room. > > > > > > I have been on a LONG journey just like everyone on here. Right now, I > > > am totally off meds, no gadget to help me get around, I can slip my > > > shoes on while standing on one leg. I was dx in 2005 and have gone from > > > wheelchair bound to being able to do a lot of things. This doesn't mean > > > I dont have other problems though. > > > > > > I truly believe the rebif and other meds has caused my body to turn > > > against itself. That doesn't mean it is so but I do know, my outcomes > > > are much higher using natural methods. I have thyroidtoxicosis, > > > diabetes, high blood pressure and severe gastro-intestinal issues that > > > have yet to be diagnosed - oh and let's not forget the narcolepsy > > > (sleeping disease). > > > > > > I believe the poster who mentioned diet and repairing is totally > > > correct, fix the problem, don't add more problems to fix another > > > problem. I am starting the McDougall Diet... its a slow process to get > > > off of meat and dairy but I am off dairy and now am working toward > > > getting totally off of meat. I will let you know if I have a good > > > outcome, I am going to give it a year and hopefully keep my thyroid! > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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