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05-05-2007, 07:46 AM | #1 | ||
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Magnate
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For the last 3 months I have been in bed with the worst inner ankle and foot pain.On a good day I can do errands in an air boot though the neuro wants me to start using the shoe.Anyhow this comes with tingling on the bottom and stabbing. It feels like there is no circulation around the ankle. In addition the calf of both legs hurt and feel tight. I have had every test 2 mri's,emg,bone scans,xrays. Been to neurologist,orthopedics,foot/ankle specialists,gp. I have had multiple blood tests for deficiencies. I do have high liver ezymes and high b12 along with low white blood but not a concern the docs said. The foot ankle doc thought it may be tarsal tunnel and I had 2 shots. Possibly surgery though no test showed tts.The neuro thinks its neuropathy and though better now may be from years of anorexia. I'm doing the best I have and still on high meal plan with just a small amount to gain left. Anyhow I was taking b12 but the neuro said since high to reduce for a week. Can anyone share any nutrition things that helped there nerve issues or anything else that helps? I have an apt at pm clinic in a week and tried pt once but made it way worse. We still don't have a definate dx but am waiting for my 2nd mri of foot/ankle back.I don't know how any of the tests don't show and I'm in this severe of pain. I also have been on lyrica,cymbalta,neurontin all which I had side effects and now am suppose to try elavil. Thank you for any help.
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05-05-2007, 07:57 AM | #2 | |||
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Wisest Elder Ever
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you should start with essential fatty acids. Poor dietary intake for a long time
with your eating disorder can damage the nerve sheath (insulation) which is provided by fats in the diet. Vits B12, B6 and folic acid work with EFAs to repair nerves. Normally fish oil is enough, but you may need Flax oil and evening primrose in the beginning as well to repair. Start at one cap/day of each, you can take up to 4 fish oil if you want unless you are on blood thinners, or have a clotting disorder, or low platelets. Magnesium and zinc also are needed. Zinc is a cofactor with selenium in thyroid hormone conversion, and if you are not utilizing the T4 your thyroid makes, then swelling in the ankles and joints occur-- it is a tissue hypothyroidism---because the T4 is converted to T3 with zinc and selenium in the enzymes there. A high potency multivit may be enough, or you could take them separately. Magnesium blocks NMDA pain channels, and can afford some pain relief. It is necessary to convert Omega-3 fats (flax)in the diet to useful fats your body needs for repair. So you need to limit sugar intake, and concentrate on good protein, and good fats. I have EFA, Zinc and magnesium threads on our Vitamin forum. It takes time to repair, so be patient.
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05-05-2007, 09:50 AM | #3 | ||
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Magnate
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Thank you for your quick reply. I just started to take fish oil its 1200mg. The neuro said for me to stop the b complex for at least a week cause my b12 levels were so high. I'm confused though cause how will I know if they go down without another blood test. Is there issues around high b12? Does extra protein help and other then sugar and that is a huge weakness for me are there other foods to avoid?Also for meds like I said I had bad side effects but now wants me to try elavil any thoughts? Thank you for your help.
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05-05-2007, 10:41 AM | #4 | |||
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Wise Elder
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Hi, you said: "The neuro said for me to stop the b complex for at least a week cause my b12 levels were so high. I'm confused though cause how will I know if they go down without another blood test. Is there issues around high b12?"
I did not know a person could have TOO HIGH LEVELS OF B-12??? Mind if I ask what your numbers were??? I just had my first b-12 level test done and I will find out on Monday what my level is. I'm trying to get as much info on B-12 as I can get. Thanks, Melody
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05-05-2007, 11:19 AM | #5 | |||
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Member
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Daniella,
There's a lot on nutrition for PN in the stickies section. My posting there, at http://neurotalk.psychcentral.com/sh...p?t=177&page=2 (scroll down to item's #18 - 20) discusses this topic. Basically, what helps your heart and general health helps your nerves function and heal. You know the drill: - whole grain foods (good balance of fiber, good fatty acids, micronutrients, slow absorbing carbs) , - lots of soluble fiber from grain, beans, nuts, fruit and vegetables (absorb cholesterol and toxins from the intestine and help maintain healthy intestinal environment), - little or no concentrated sugar from any source, including fruit and juice (really bad...stresses the liver, the pancreas, directly stresses nerves, increase inflammatory response), - small amounts daily of high quality protein from beans, fish, eggs, small servings of lean meat (the basic building blocks of cells), - and as MrsD stressed and me too in the sticky, a good balance of omega-3 and omega-6 oils (reduce plaque, reduce inflammation, basic building block of nerve myelin sheath). My wife and I used to be meat-and-potatoes folks, but over the years, as runners and fitness buffs we slowly changed over to a healthy diet. Start out by substituting: non-fat milk for regular or low-fat (you get used to it within a week) and then low-fat soy milk. Absolute no-nos starting now are regular sodas (about 10 tsp. of sugar per 12 oz.), sweetened coffee drinks (a vente Frappacino has about 30 tsp. of sugar!), fruit juice (same as soda, except it's fructose which is even more of a shock to you system than sucrose). Slowly switch to healthier meats or tofu, and cut portions. I hardly eat beef or pork anymore, preferring fish, tofu, or a bit of lamb occasionally because its grass fed, lean, and hormone and antibiotic free. Pass on the cake and go for fruity deserts, and eventually fresh fruit for dessert. When you cook, use olive or canola oil. I fry with olive oil almost exclusively. It's especially delicious with eggs, and in baked goods. Use Smart Balance or comparable as a spread, and eventually use NO fats on toast. On toast, my wife and I went from butter to margarine to Smart Balance to just a thin film of Smart Balance to jam only on toast...and then switched from jams or preserves to spreadable fruit that I heap on without guilt. We also went from wheat bread to whole grain breads...now wheat and white bread taste like pablum or mush to us. Your taste changes quickly to conform to what you're eating, so be adventurous and stick with the healthier foods you like. Diet isn't enough. You also need to exercise. But that's for another thread. Your body mass index (BMI) should be less than 25, and ideally less than 22 (see http://www.nhlbisupport.com/bmi/ ) . My BMI is 25.1 so thanks for your post. Its a wake-up call for me. All drugs are toxic to some degree. They stress the liver and kidneys which have to eliminate them. This is something to be aware of in your search for health. As you get healthier, you might be able to reduce your daily drug intake under a doctor's supervision. We tend to add drugs as we age, and continue ones that aren't necessary. Except for carefully calibrated amounts of specific drugs to control life threatening things, we can often safely cut back or eliminate some. You can cheat every once in a while with a clear conscience because the only angels are in heaven. Negative emotions make our life worse and our PN much worse so don't beat yourself up over any of the above. It's not your fault that you have PN. jAll of us were blind-sided by it.
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David - Idiopathic polyneuropathy since 1993 "If you trust Google more than your doctor, than maybe it's time to switch doctors" Jadelr and Cristina Cordova, "Chasing Windmills" Last edited by Wing42; 05-05-2007 at 05:46 PM. |
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05-05-2007, 12:04 PM | #6 | ||
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Magnate
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To be honest I don't know the exact numbers but I think they were very high. I'm not diabetic though. I had started though taking the b complex a few weeks before. I'm actually still underweight though I have gained a huge amount. I see a nutritionist and she is helping me with this as well. I'm on a very high calorie diet. I just like to hear from people who have been through. So extra protein though doesn't help rebuild the nerve quicker? Were you saying soy is good? I do drink lf soy milk in addition to low fat dairy. I wonder why sugar is such an issue if not a weight problem?I eat mostly whole grain but I do consume sugar.Thanks and Melody I will find out. I have had so many tests and been to so many docs and I forget things sometimes.
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05-05-2007, 01:11 PM | #7 | |||
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As a practical matter to slow down carbohydrate absorption, my excellent physician at Scripps Clinic here in San Diego recommended including a few nuts or a bit of cheese when eating high sugar fruit such as an apple or orange. The glycemic index of starch is the same or more than sugar. My next dietary change will be to switch to mixed grain pasta for that reason. Protein can't be stored in the body. Once you have enough protein, any additional is broken down into fats, sugars, and toxins. Most Americans get more protein than is healthy. Soy is good because it's low oil, and soy oil is healthier than animal fat. It's not a magic cure or anything. The highest quality and easiest digested protein sources, in order, are eggs, fish, lean poultry, vegetable proteins (soy, beans and grain together), red meat, shoe leather. ======== I don't think that there is any magic or quick cure for PN. Except in rare cases of PN caused by infection or toxins, most of our PN represents a breakdown in our general health. That breakdown shows up differently for each of us. Some get diabetes or heart disease or arthritis or other degenerative diseases. We got PN. Some of us have several or all these problems and more at the same time. Metabolic disorder is the root cause of much or most of this degeneration. That's the problem with sugar and starch. Has your doctor reviewed what the nutritionist is doing? I don't think most certified clinical nutritionists would recommend a high carbohydrate diet unless you have specific health conditions that require it. Back in the 70's through early 90's when I ran and backpacked and my wife ran and taught aerobic dancing, a high carb diet was the norm for athletes. Then came the goofy Atkins no-carb diet. The thinking now, backed by a lot of research, is that variations of the Mediterranean diet are best. All the diets ("The Zone", "South Beach", "Omega Diet", etc.) look much like the new USDA food pyramid ( http://en.wikipedia.org/wiki/MyPyramid ) and the very similar Canadian government food pyramid. It seems to me that reducing PN symptoms in a sustainable way requires a return to health, a holistic approach involving healthy diet, exercise, reducing toxins in our lives, controlling our negative emotions, and developing health affirming spiritual values and vision. In a sense, PN is a reflection of who we are and how we live. Becoming PN free requires a change in who we are and how we live. This approach has worked pretty well for me, and others here. As I type this, I'm totally pain free (except for my cat who insists on walking on the keyboard as I type. He can be a pain ).
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David - Idiopathic polyneuropathy since 1993 "If you trust Google more than your doctor, than maybe it's time to switch doctors" Jadelr and Cristina Cordova, "Chasing Windmills" Last edited by Wing42; 05-05-2007 at 03:24 PM. |
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05-05-2007, 04:18 PM | #8 | |||
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Member
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Wonderful post! Thanks for all this. I've been the meds route for various things and find I'd much rather control as much as I can in a more holistic and natural way. The meds caused more problems than they were worth and more problems than what they were given for to begin with!
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05-05-2007, 06:22 PM | #9 | ||
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Magnate
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Thank you times a million. Your so educated. Ok see my case is very complex. My history of anorexia till 1 year ago was a very bad case. It led me in and out of hospitals and cardiac units. I had dropped more then 40 pounds under. So on that note I went ip again and when I came out a year ago have regained a lot of weight but still are under slightly. On an ed recovery diet is high calorie but based on ada exchanges. My blood sugar when tested is normal but I told thr neuro how I drink in access.So the neuro said not diabetes but could that be pre.I did't ask. I'm new to this so without my mom there I get confused though I'm 28. All the docs are aware of my past and have seen my medical history. Its frustrating as this year I have been the healthiest of my whole life and finally getting my act together and now this. I'm comitted to being healthy now and maintain a normal weight/nutrition. I'm willing to do what ever to feel good. The issue with sugar is me and I guess when you have been malnurished there just happy you get adequate calories. I do eat the rest healthy carbs of whole grains,lean protein,healthy fats though. I'm very concerned though also as now my other leg is hurting as well. I thought it was from too much pressure from not using the original injured one but now am wondering what is going on. I know there is no quick fix but hoping to speed along. As for moving. I'm in so much pain that like I said I'm in bed most days. I don't know if that is helping or making things worse. I need to try tomorrow to get out of the airboot as like I said my other leg is in a lot of pain too and want to try to equal my stand. Its like cause no exact dx all the docs I see are more taking guesses I feel. Even the docs I was going to see out of state who reviewed my case felt there wasn't anything they could do. I'm hoping the next tests give more direction.I feel like I'm loosing my mind and now if both legs/feet are going I don't know what to do but trying to stay in the moment. Thanks again.
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08-23-2011, 06:57 PM | #10 | ||
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Junior Member
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Pretty good advice except don't cook with olive oil, it is unstable (in that it changes molecularly when heated) coconut oil and butter are stable to cook with, olive oil great on salads or cold, not heated. And margarine is plastic, butter is real. Changing your lifestyle is the most important thing, watch the food you eat, make sure its mostly plant base, read the book authored by Dr. Thomas Rau regarding eating for an alkaline balance. Exercise too, read up on the no-nos, sugar, soda, white flour, alcohol except on occasion, etc. etc. Take care and keep educating yourself.
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