RE: [TMIC] medications and supplements
' I do feel muscle pain at certain points and to me, that is a good feeling.' I agree with you here. I know some people have a lot more pain than I do and NEED meds. But for me, it's a feeling that tells me the numbness is going away. And having lived with migraines for so many years, I'm not that sensitive to pain, anyway, as long as I can still think (I can't think w/a migraine). Even the spasms, I don't mind too much, unless they're keeping me awake. I feel like, at least the muscles are working - better than not being able to move a muscle at all! 'I also read on here that we shouldnt boost our immune system,' I've read that too, but only recently. Does anyone else have any info on that. I was going to take some supplements that sounded like they might help me, but then I read that anyone who has an auto-immune condition shouldn't. I wonder . . . The first time I read it was on a bottle of melatonin. My neuro said not to take it. But when I saw the pharmacist that's been advising me, he questioned it. Later, he said he looked it up, and found that the warning was based on the case of ONE woman who had reacted to the melatonin. She had MS and was PREGNANT. Based on that, he assured me I had no need to worry about using it if I needed to. Sally
RE: [TMIC] medications and supplements
WELL, SAID, LORI. BULLY ! BULLY ! - Original Message - From: Lori Biehler To: Jenna Stentz;TM List Sent: 1/18/2007 6:36:33 PM Subject: RE: [TMIC] medications and supplements Hello to Jenna and the list, I really hate reading all this crap being spilled about how this cannot work for you or how you want to make money. I will tell the list how I feel and how I have been doing and what is helping me. I have been on the list since, 1999 and usually in the background these past few years. After Doc died, I really had a hard time with some people on the list and that was my problem, not anyone on the lists fault. Just some things I had to get over. I was struck with TM in July of 1998 and I have been a patient of Dr. Kerrs since 2000, when his practice began and he agrees 100% with my treatment plan for me, not for everyone, but for me. I was on baclofen, neurontin, marinol, etc. I think I have tried them all and the side effects from all of them made me feel terrible. I am a very lucky lady with my progress and my lack of progress. My TM hit at C2 and at T3 and T6. If you were to see me, I look totally normal and am able to do so many things that even two years ago I couldnt. What do I do? Well, I dont take any meds at all. I hate the nasty feeling as I call it, but I prefer to feel that and function. Does smoking a bit of weed make it go away? Oh yes, instantly, but I prefer not to live my life stoned. Marinol made me stoned, even on the smallest dose, so that was my choice and I am not against anyone smoking for any reason, their choice, and their body. As for my procreoception and lack of muscle strength, well I! exercise and for me, the worse and weaker I feel, the more I work out. I have above normal strength now for a woman of my age and it has helped me immensely. I read on here all the time to take it easy and let your body heal, well I believe that after the initial 6 months or so, working until fatigue is not a bad thing. I dont work to fatigue every time I work out, but I do about once a month and after a nap, I am fine. I do feel muscle pain at certain points and to me, that is a good feeling. I know if I feel muscle soreness on my left, my right side worked also. It has worked for and continues to do so. Building muscle hurts the able bodied, why should we be different? I also see a neuro in NJ and after 8 years, my babinsky, not sure if that is spelled correctly, is no longer positive and he cant explain it. I have to tell you that my neuro here is a Doogie Howser type of man. He is extrememly young, and Columbia trained, so he isnt a slouch and he concurs with everything I do. I do take B12, and my B12 levels are totally normal, yet after a shot, my nerve pain goes almost totally away and medically, there is no reason for this. Do I care that there is no reason? No way, as far as I am concerned, it helps me that is all that matters. I also read on here that we shouldnt boost our immune system, well I am not so sure about that. Again, this is my opinion and how I live and believe. So many of us are idiopathic, I dont know that I have an autoimmune disease because TM is a symptom, not a disease. I believe that possibly my immune system was whacked, not weak, so I keep mine very strong with the food I eat and dont eat. I dont want it weak, I want mine strong and working and this works for me. There are other supplements that I take as needed, such as lycine, but I wont go into the list on here because we all have different issues and different needs. Jenna, go for it. If it works for you, I want to thank you for telling us all about it. I find it extremely interesting and because it helps you, it interests me. I prefer anything natural over meds. I do believe that some people absolutely need medication, but I also believe that there are many, many other things out there that can help us also and we all can make our own decisions as to what we need and want and the more information we share with each other the better for everyone. Well, I am done and off my bully pulpit. Lori From: Jenna Stentz [mailto:[EMAIL PROTECTED] Sent: Thursday, January 18, 2007 12:20 PM To: Kathryn Keen; TM List Subject: Re: [TMIC] medications and supplements Good Afternoon all, I apologize if you misunderstood. I was not attempting to sell something. That was not my intention. I have not posted about this since my improvement had really been taking off in September, for fear someone would misunderstand. My improvement has been so substantial that I felt sharing this could help some of you suffering from TM symptoms. I have not implied this will cure anything, only that my experience with glyconutrients is that it provides the necessary nutrients for my body that has allowed my cells to properly communicate and my body has begun to repair. I really wanted to share my experience with these technologies since lately there have
Re: [TMIC] medications and supplements
Thank You!! I knew it was BOGUS just reading the e-mail! I have sold encyclopedias, vitamins (Shaklee), Mary Kay, and Amway over the years. I started in high school selling tupperware. MLM is a great way to make money. I have an acquaintance who was single, blind and in a wheelchair when he was signed up in Amway, he now earns over $500,000 per year selling Soap. Soap is different that Miracle Vitamins... It works. F
Re: [TMIC] medications and supplements
Hi everybody. You are right about omega-3 oils -- they are a *very* powerful anti-inflammatory. This BOGUS
Re: [TMIC] medications and supplements
Good Afternoon all, I apologize if you misunderstood. I was not attempting to sell something. That was not my intention. I have not posted about this since my improvement had really been taking off in September, for fear someone would misunderstand. My improvement has been so substantial that I felt sharing this could help some of you suffering from TM symptoms. I have not implied this will cure anything, only that my experience with glyconutrients is that it provides the necessary nutrients for my body that has allowed my cells to properly communicate and my body has begun to repair. I really wanted to share my experience with these technologies since lately there have been so many posts on the list from people in so much pain and suffering from the symptoms of TM and MS and I no longer have these symptoms. They are not being masked by drugs anymore they are actually gone. I feel like I have been given a second chance at life. I no longer spend 70% of my day in bed. I am enjoying my girls and husband so much. Life is a joy for me again! My internal medicine doctor, who I have been seeing for two and a half years, is absolutely amazed at the change in me. My doctor has had me on many supplements and was doing acupuncture since I started seeing him. I did have some improvement in some symptoms but my body had never had any real healing. In June when I began taking Glyconutrients I was taking six side effect heavy medications and I am now down to one, at a half dose, and I am tapering off this one as we speak. I am not knocking other supplements and natural nutrients. I still take my fish oil and I agree this is a very helpful supplement! I also still take a Cranberry Buchu product from Natures Sunshine to help prevent bladder infections. I used to take 12 a day I now only take 4 due to the helpful effects of Glyconutrients. Our bodies still need the raw materials to perform the daily activities and repairs Glyconutrients does not replace these important needs for basic raw materials, exercise, water, etc it only provides a missing set of materials that are critical to our bodies ability to properly function as intended. I am really not going to spend a lot of time disputing what the Internet has spewed out about glyconutrients, you know they even say Elvis is still alive on the Internet as well, but only leave you with this: Most of those negative reports are from those who already have a predisposed negative view about these products and marketing tools. Yes, it is network marketing and they are not being sly or coy about their product, but due to FDA regulations they CANNOT talk to you about specific products only Glyconutrients in general related to results. I do want to mention the ratbags web site as much of their evidence is skewed in its view and not balanced, an example is the PDF document referencing the tree sourcing by the company. If viewed with the lens that this is already negative you would assume that the use of the fibers in the glyconutrients was simple fiber to fill the product, but if you actually looked at the product and used and studied where the saccharides come from it you would notice the wording about where these fibers are used. It is a statement about the use of the quality fiber used in a completely separate product line, NOT the primary glyconutrient supplement (I have been on the primary supplement since June of last year). And furthermore, the saccharides are derived from these types of plants in a patented extraction process anyway, so the raw material might look a little funny in a press release. If you are interested in real science about glyconutrients, please look at real science journals and web sites Journal of Anatomy, Embryology and Cell Biology devoted and entire issue of their publication Acta Anatomica Vol.161, No. 1-4, 1998 publication to the topic of the glycosciences OR Science Magazine, a peer-reviewed journal of the American Association for the Advancement of Science (AAAS), devoted its 23 March 2001, Volume 291, Issue 5512 to carbohydrates and glycobiology. Look at JAMA and many others, these will dispel many of the urban legends around glycobiology. Well if anyone is left reading at this point I just want to say that I felt that people on this list could benefit from what I have used and had great improvement with.! Have a great day! Jenna Kathryn Keen [EMAIL PROTECTED] wrote: I was interested in the claims made in Jenna's post on Glyconutrients, (http://www.vitalcarbs4life.com/ http://www.glycoscience.org/) but felt it sounded a bit like a sales pitch. I did a web search and found many sites selling the same thing with the almost the same wording as one another. It sounded a bit like a pyramid selling scheme. None seem to actually describe the product they're selling in any details, or give prices or ingredient
Re: [TMIC] medications and supplements
Frank, Do you really think I am lying? It's not who I am. I have medical proof of where I was and where I am through 2 of my Dr's. I see my neuro at the end of the month and can't wait to see what my improvement has been from his perspective. I'll let you know what he has to say! Jenna [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: Thank You!! I knew it was BOGUS just reading the e-mail! I have sold encyclopedias, vitamins (Shaklee), Mary Kay, and Amway over the years. I started in high school selling tupperware. MLM is a great way to make money. I have an acquaintance who was single, blind and in a wheelchair when he was signed up in Amway, he now earns over $500,000 per year selling Soap. Soap is different that Miracle Vitamins... It works. F - Finding fabulous fares is fun. Let Yahoo! FareChase search your favorite travel sites to find flight and hotel bargains.
Re: [TMIC] medications and supplements
HI Jenna, I have heard of using glyconutrients and phytonutrients. I have read they have helped people with illnesses such as fibro, ms and other auto-immune problems. There is a lot of literature out there on this - scientific and medical. You can lead a horse to water but you cannot make him drink, as they say. Thanks for having the thougthfulness to share with us. I guess I am trusting and like to see the good side of most things. But, in this instance I have also heard of all this before and know of others who have been helped so do believe you; believe the experts. It is good to be open to new things; especially when they make you better. You are the winner here, so do not worry what others think. Natalie Boyles On 1/18/07, Jenna Stentz [EMAIL PROTECTED] wrote: Frank, Do you really think I am lying? It's not who I am. I have medical proof of where I was and where I am through 2 of my Dr's. I see my neuro at the end of the month and can't wait to see what my improvement has been from his perspective. I'll let you know what he has to say! Jenna * *
Re: [TMIC] medications and supplements
Hi -- There are several books out about anti-inflammtories now, and you can read all about them and how they work at this site http://www.HealthIsRightAroundTheCorner.com , click on Product Info at the side. and google has many other sites about them. I am taking this for my arthritis, and it really helps me. This is totally BOGUS. anti-inflammtories don't exist- look the word up in a real dictionary. This is a scam to take your money from your pocket or purse. I'm right about this, this time. F
Re: [TMIC] medications and supplements
My improvement has been so substantial that I felt sharing this could help some of you suffering from TM symptoms. I have not implied this will cure anything, only that my experience with glyconutrients is that it provides the necessary nutrients for my body that has allowed my cells to properly communicate and my body has begun to repair. Again, may I tell you all, This is BOGUS. I read Science, every week for the last 30 years. that issue you refer to doesn't talk about glyconutrients. If indeed you had remarkable improvement from glyconutrients, the original disease probably was psychosomatic. The placebo effect still works. Sorry to burst your bubble. Billions of our dollars get spent each year on junk like glyconutrients. We should not waste our time or money on stuff like that. F
Re: [TMIC] medications and supplements
The product they are selling is the very thing that saved my now 12 yr old dog from double hip replacement and the effects of severe arthritis. Dog people have been using this kind of supplement for yrs, so have horse owners. Guess now they have found it works for people too. If you have not tried it dont knock it. At least be a bit more polite to the people who have found it to work for them. This list is getting rude. It must be the winter blues, as I know we are usually nicer and more open minded. Natalie B Hi -- There are several books out about anti-inflammtories now, and you can read all about them and how they work at this site http://www.HealthIsRightAroundTheCorner.com , click on Product Info at the side. and google has many other sites about them. I am taking this for my arthritis, and it really helps me.
Re: [TMIC] medications and supplements
Do you really think I am lying? It's not who I am. I have medical proof of where I was and where I am through 2 of my Dr's. I see my neuro at the end of the month and can't wait to see what my improvement has been from his perspective. I'll let you know what he has to say! Jenna, I'd love to see your medical proof! I'd love to communicate with your doctors. Are they M.D.s? At best, I think you may have been taken advantage of. Just my take on your story. Sorry F
Re: [TMIC] medications and supplements
The product they are selling is the very thing that saved my now 12 yr old dog from double hip replacement and the effects of severe arthritis I don't believe these products are related to glucosamine/chondroitin sulfate that you, your dog and my girl-friend take. If anyone can show me a relation between the two, please do. I get really upset when people take advantage of sick people in order to earn money. F
RE: [TMIC] medications and supplements
Frank, I do not understand your position. It really does not matter what you thinkthe bottom line is that Jenna found it to be a miracle drug. She is what this list is all about! We share with each other the things that make us feel better. I let the group know that Lyrica has helped me a lot so maybe it will help them as well. I don't really trust a lot of the supplements on the market, however Jenna's experience has induced me to try it as well. It may do nothingbut many times a person taking a placebo (not knowingly) experiences improvementmaybe it is just mental, but who cares if it helps. I beg the people on this list to talk about anything that has improved their conditionto me this is the most important feature of the list. I will defend anyone who shares their experiences with usI may not follow their lead, but I will at least consider what they are saying. I don't mean to be long winded, but I think the group should just say thank you to Jenna and leave it at that. What we do or don't do is up to us! Rob in New Jersey -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Thursday, January 18, 2007 4:51 PM To: Jenna Stentz; Kathryn Keen; TM List Subject: Re: [TMIC] medications and supplements Do you really think I am lying? It's not who I am. I have medical proof of where I was and where I am through 2 of my Dr's. I see my neuro at the end of the month and can't wait to see what my improvement has been from his perspective. I'll let you know what he has to say! Jenna, I'd love to see your medical proof! I'd love to communicate with your doctors. Are they M.D.s? At best, I think you may have been taken advantage of. Just my take on your story. Sorry F
RE: [TMIC] medications and supplements
Thank you Rob. I was thinking the same thing. What works for one person may not work for others. That is why everyone on this list is on different medications. What works for my daughter, may not work for you, etc. I applaud Jenna for having the courage to be able to tell everyone about her experience, even though she hasn't been getting a lot of warm responses. Tracey L. Black Certified Insurance Service Representative Hockley O'Donnell Insurance Agency Phone - 717-334-6741, x 29 Fax - 717-334-3414 Thank you for providing information to us. Please beware that no coverage is bound and no change to your insurance program is confirmed until verified by a licensed agent during regular business hours. If you do not hear from us within 1 business day, please re-contact us in case your information has not been retained. -Original Message- From: Robert Pall [mailto:[EMAIL PROTECTED] Sent: Thursday, January 18, 2007 5:07 PM To: [EMAIL PROTECTED]; Jenna Stentz; Kathryn Keen; TM List Subject: RE: [TMIC] medications and supplements Frank, I do not understand your position. It really does not matter what you thinkthe bottom line is that Jenna found it to be a miracle drug. She is what this list is all about! We share with each other the things that make us feel better. I let the group know that Lyrica has helped me a lot so maybe it will help them as well. I don't really trust a lot of the supplements on the market, however Jenna's experience has induced me to try it as well. It may do nothingbut many times a person taking a placebo (not knowingly) experiences improvementmaybe it is just mental, but who cares if it helps. I beg the people on this list to talk about anything that has improved their conditionto me this is the most important feature of the list. I will defend anyone who shares their experiences with usI may not follow their lead, but I will at least consider what they are saying. I don't mean to be long winded, but I think the group should just say thank you to Jenna and leave it at that. What we do or don't do is up to us! Rob in New Jersey -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Thursday, January 18, 2007 4:51 PM To: Jenna Stentz; Kathryn Keen; TM List Subject: Re: [TMIC] medications and supplements Do you really think I am lying? It's not who I am. I have medical proof of where I was and where I am through 2 of my Dr's. I see my neuro at the end of the month and can't wait to see what my improvement has been from his perspective. I'll let you know what he has to say! Jenna, I'd love to see your medical proof! I'd love to communicate with your doctors. Are they M.D.s? At best, I think you may have been taken advantage of. Just my take on your story. Sorry F
Re: [TMIC] medications and supplements
From your reaction, Frank, one would think that Jenna was trying to tell everyone to use glyconutrients to cure them of all their TM symptoms - and to send her the money for it! I don't think that's at all what she said. If we are afraid to share ideas with each other, we may all be missing out! Very often when a supplement 'WORKS' it is because it's supplying something we have a need for. How can one person possibly tell another that something CAN'T work for them? As Rob pointed out, even if the improvement were only psychological, if it makes them feel better, is that bad? Sally
RE: [TMIC] medications and supplements
Hello to Jenna and the list, I really hate reading all this crap being spilled about how this cannot work for you or how you want to make money. I will tell the list how I feel and how I have been doing and what is helping me. I have been on the list since, 1999 and usually in the background these past few years. After Doc died, I really had a hard time with some people on the list and that was my problem, not anyone on the lists fault. Just some things I had to get over. I was struck with TM in July of 1998 and I have been a patient of Dr. Kerr's since 2000, when his practice began and he agrees 100% with my treatment plan for me, not for everyone, but for me. I was on baclofen, neurontin, marinol, etc. I think I have tried them all and the side effects from all of them made me feel terrible. I am a very lucky lady with my progress and my lack of progress. My TM hit at C2 and at T3 and T6. If you were to see me, I look totally normal and am able to do so many things that even two years ago I couldn't. What do I do? Well, I don't take any meds at all. I hate the nasty feeling as I call it, but I prefer to feel that and function. Does smoking a bit of weed make it go away? Oh yes, instantly, but I prefer not to live my life stoned. Marinol made me stoned, even on the smallest dose, so that was my choice and I am not against anyone smoking for any reason, their choice, and their body. As for my procreoception and lack of muscle strength, well I exercise and for me, the worse and weaker I feel, the more I work out. I have above normal strength now for a woman of my age and it has helped me immensely. I read on here all the time to take it easy and let your body heal, well I believe that after the initial 6 months or so, working until fatigue is not a bad thing. I don't work to fatigue every time I work out, but I do about once a month and after a nap, I am fine. I do feel muscle pain at certain points and to me, that is a good feeling. I know if I feel muscle soreness on my left, my right side worked also. It has worked for and continues to do so. Building muscle hurts the able bodied, why should we be different? I also see a neuro in NJ and after 8 years, my babinsky, not sure if that is spelled correctly, is no longer positive and he can't explain it. I have to tell you that my neuro here is a Doogie Howser type of man. He is extrememly young, and Columbia trained, so he isn't a slouch and he concurs with everything I do. I do take B12, and my B12 levels are totally normal, yet after a shot, my nerve pain goes almost totally away and medically, there is no reason for this. Do I care that there is no reason? No way, as far as I am concerned, it helps me that is all that matters. I also read on here that we shouldn't boost our immune system, well I am not so sure about that. Again, this is my opinion and how I live and believe. So many of us are idiopathic, I don't know that I have an autoimmune disease because TM is a symptom, not a disease. I believe that possibly my immune system was whacked, not weak, so I keep mine very strong with the food I eat and don't eat. I don't want it weak, I want mine strong and working and this works for me. There are other supplements that I take as needed, such as lycine, but I won't go into the list on here because we all have different issues and different needs. Jenna, go for it. If it works for you, I want to thank you for telling us all about it. I find it extremely interesting and because it helps you, it interests me. I prefer anything natural over meds. I do believe that some people absolutely need medication, but I also believe that there are many, many other things out there that can help us also and we all can make our own decisions as to what we need and want and the more information we share with each other the better for everyone. Well, I am done and off my bully pulpit. Lori _ From: Jenna Stentz [mailto:[EMAIL PROTECTED] Sent: Thursday, January 18, 2007 12:20 PM To: Kathryn Keen; TM List Subject: Re: [TMIC] medications and supplements Good Afternoon all, I apologize if you misunderstood. I was not attempting to sell something. That was not my intention. I have not posted about this since my improvement had really been taking off in September, for fear someone would misunderstand. My improvement has been so substantial that I felt sharing this could help some of you suffering from TM symptoms. I have not implied this will cure anything, only that my experience with glyconutrients is that it provides the necessary nutrients for my body that has allowed my cells to properly communicate and my body has begun to repair. I really wanted to share my experience with these technologies since lately there have been so many posts on the list from people in so much pain and suffering from the symptoms of TM and MS and I no longer have these symptoms. They are not being masked by drugs anymore they are actually gone. I feel like I
Re: [TMIC] medications and supplements
Hi Frank,
These are perna green mussels. They are given to dogs with arthritis and
joint disease.The suppliment is glycoflex. It is just a well know fact among
vets, dog owners, breeders. It works. You need to do a little research. If
you do not know much about dog showing and breeding perhaps that is why you
have never heard of it. It may be out of your range of knowledge.
Perna contains a natural mineral balance similar to that of the human. It
is made up of 61% protein, 13% carbohydrates, 12%
glycosaminoglycanshttp://www.peteducation.com/article.cfm?cls=1articleid=1423(GAGs),
5% lipids (including eicosatetraenoic acids, or ETAs), 5% minerals,
and 4% water. Perna mussel also contains
glucosaminejavascript:popupWin1('/dictionary_term.cfm?term=glucosaminecls=0',
50, 50,
350, 300), a GAG precursor and one of the building blocks of cartilage.
Glucosamine, GAGs (unbranched chains of complex sugars) and ETAs (a type of
Omega-3 fatty acids) are the compounds in the mussel believed to contribute
to its beneficial effects. ETAs are the key ingredients that help in the
anti-inflammatory activity and thereby the reduction of joint pain. GAGs are
the main components of cartilage and the synovial fluid found in joints.
http://www.peteducation.com/article.cfm?cls=0cat=1448articleid=1557
Natalie
On 1/18/07, frank @ franksheldon. com [EMAIL PROTECTED] wrote:
The product they are selling is the very thing that saved my now 12 yr
old
dog from double hip replacement and the effects of severe arthritis
I don't believe these products are related to glucosamine/chondroitin
sulfate that you, your dog and my girl-friend take.
If anyone can show me a relation between the two, please do.
I get really upset when people take advantage of sick people in order to
earn money.
F
Re: [TMIC] medications and supplements
Hi everybody. You are right about omega-3 oils -- they are a *very* powerful anti-inflammatory. This is a hot field of research right now, as they prove that so many of our medical problems and pains are caused by inflammation in the body. People with TM and similar diseases have serious inflammation on the spine and throughout the body. You can get a *free* bottle of the most powerful type of omega-3 anti-inflammatory supplement -- from the New Zealand Green-lipped mussel -- at this site. Just pay $6.95 for shipping for a month's supply. If it will work for you, you should notice some improvement in a month. It's definitely worth a try. http://www.UltimatePainRelief.com take care -- Michelle - Original Message - From: Kathryn Keen [EMAIL PROTECTED] To: Jenna Stentz [EMAIL PROTECTED]; TM List tmic-list@eskimo.com Sent: Wednesday, January 17, 2007 7:47 PM Subject: [TMIC] medications and supplements I was interested in the claims made in Jenna's post on Glyconutrients, (http://www.vitalcarbs4life.com/ http://www.glycoscience.org/) but felt it sounded a bit like a sales pitch. I did a web search and found many sites selling the same thing with the almost the same wording as one another. It sounded a bit like a pyramid selling scheme. None seem to actually describe the product they're selling in any details, or give prices or ingredient lists etc. but all make these really huge claims. I also came upon this site, which gave a different perspective, and refuted claims about some of the studies: http://www.ratbags.com/rsoles/comment/mannatech.htm http://www.ratbags.com/rsoles/comment/mannatech060910.pdf Having said that though, Jenna, I'm not disputing your claims, and would be very interested in any treatment or supplement that actually works. Like everyone else here, I'd love to be cured or at least to find something that relieves the suffering a bit (or a lot!). I have noticed since being struck down by TM that I sometimes get huge sugar cravings and eat lollies when I do. I never used to have a sweet tooth, but now I do. I don't pig-out on them all the time, (because my legs are already wasted heaps from a yr in a wheelchair, and I don't want to have to put on extra weight for them to have to try to hold up, as I'm now managing to walk a bit now with a Canadian crutch), but the sugar-craving is something I've noticed. I wonder if that's something to do with the claims of the sites on the Glyconutrients about sugars? Maybe it's just coincidence, but I did wonder if my body may be needing more sugars or something, when I had these real cravings for something sweet. One doctor I saw while having a scan done suggested to me that fish oil supplements and glucosamine are useful in demylenating diseases, as they will help protect it in some way. I take the fish oil, as I'm a vegetarian (not any more I guess :), and think maybe I've been missing out on something in the diet. (Although no way I could bring myself to eat meat though).. But I haven't tried the glucosamine yet as it's too expensive, and I'm only barely struggling to make ends meet as it is. Has anyone tried the glucosamine? None of these things is actually a 'cure' or anything, but just maybe a maintenance thing to try to keep as well as possible, under the circumstances. I do get a bit worried at some of the quackery that targets sick people, who are desperate for cures or relief, and are probably an easy target for unscrupulous people to make money out of. But if anything would give some relief, then it would be great. I just don't want to be ripped off, because it's so hard to manage with being sick anyway. I agree with others that have written in here, with the pain. I've found the constant pain is the worst part of this. My back pain just won't go away. Some days it's not as bad as others, but it's always there. I find when I've tried to push myself to do more, I tend to pay for it over the following days with heaps more pain and fatigue. After the back pain, the legs and feet are next worst, with the pain and frozen feeling and banding. But all my joints seem so incredibly painful at times too. It's just relentless. Then there's the spasms and twitching legs; and not being able to go to the loo without heaps of laxatives every day, or to even push properly. I'm taking 200mg Tramadol morning and night for the pain, and Neurontin (which I can barely afford, so only take a little, as it's not on the PBS for neuropathic pain here, and costs almost $100 a packet at most chemists), and Baclofen for the spasticity, (which has made a huge difference for me). I still sometimes need to take Endone in the middle of the day if the pain becomes too severe. I've tried going off the Tramadol, as I don't want to become dependant on it, but the pain is just unbearable when I do. 200mg Tramadol is the biggest dose available and is
