It's a super easy and great way to spread awareness and support CMT Research. Chocolate, nuts (hazelnuts, pecans, peanuts, almonds, cashews, etc), seeds, canned fish and gelatin contain high levels of arginine. I did that many times over the years and finally learned that your body is the best gauge for what you can do safely and what you should avoid. nuts like almonds and walnuts. Does Charcot-Marie-Tooth contribute to high cholesterol. Dietary Dos and Donts for Migraine Sufferers, Shirshasana (Headstand) Versus Inversion Therapy Using Inversion Table, Understanding Joint Pain and Tips to Get Relief Using Home Remedies, Erectile Dysfunction: Does Opioid Cause ED, Libido: Opioid Induced Female Sexual Dysfunction. Calories are the specific units of energy found in foods. After making it regularly for the past week or so, Ive learned a few things. Can anyone help me? Thrombocytopenia is a drop in the bloods platelet count that can lead to internal and external bleeding as well as a related condition that can cause permanent kidney damage. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The only thing to be aware of and to tell the doctors about is that you will not recover from anesthesia as quickly as a person without CMT, so they need to take their time in moving you. September 24, 2019. Dexmethylpenidate (Focalin), approved in 2001, is chemically similar to Ritalin, a drug familiar to many. It was soo painful. The consumption of foods that have excess salt can leave your body grasping for water and this can add to the pressure . Venlafaxine (Effexor) is a popular and widely used antidepressant that is also used to treat neuropathic pain, especially well studied in patients with diabetic neuropathy, although the drug has no current specific FDA indication for this use. We are not doctors, so we urge you to consult a doctor before beginning an exercise plan. What To Eat & Avoid When You Have Niemann Pick Disease? Wash your utensils, cutting boards, and countertops with hot, soapy water after preparing each food item. While it is not known if that finding can be applied to CMT muscles, it is hopeful news. Let's go girls! The CMT doctors all agree that it is more important to control high cholesterol than to worry about possible muscle weakness. If you feel you are doing well incorporating these basic dietary guidelinesn but feel lost or are unhappy with your current energy levels or mobility, it may be worth meeting with a neuromuscular registered dietitian to help develop a more customized direction for you to take with your nutrition. Having your physician see the clawing and examining the hand is needed for specific recommendations, but the narcotics would be a highly unlikely underlying cause. Many of the cancer trials used the drug in combination with other chemotherapy drugs that often cause neuropathy, but studies did not find a further increase with the Avastin. The CMTA is a 501(C)(3) nonprofit organization, EIN# 22-2480896. The drug does have a variety of side effects and unusual complications that should be considered before use or withdrawal of use. info@cmtausa.org The feedback link Was this Article Helpful on this page can be used to report content that is not accurate, up-to-date or questionable in any manner. Three small portions of dairy a day, especially reduced-fat versions, are also important. French fries can also cause obesity. Why should you join GRIN?Its pretty simpleWe need YOU! With this approval, the FDA granted a . smaller meals with regular healthy snacks in between, https://www.youtube.com/watch?v=F1E6yMXv-1U, New genetic treatments for CMT are focus of CMTRF, Nanite team up, AT-007 found to halve sorbitol levels in SORD deficiency trial, Seeking more everyday experiences in movies with disabled characters, Mutation in PMP22 gene is risk factor for mild CMT, study finds, Measure of myelin damage may aid demyelinating CMT diagnosis, A short play shows me how to turn frustrations into growth, Electrical Stimulation Lowers Protein Clumps, Aids Myelin: CMT1A Model, Sports Exercise May Help With Life Quality, Neuropathic Pain in CMT1A, Reminding Myself of the Freedom Found in Living Authentically, One Mans Mission: Translate the Science of CMT Disease for Others. Eight ounces of lowfat chocolate milk has 158 calories, 2.5 grams of fat, 26 grams of carbs, 425 grams of potassium, and 8 grams of protein. Most toxic exposures are from much higher dosages, mostly of 250 mg or more a day. Fiber acts as a prebiotic, so it helps feed beneficial bacteria in your gut. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Copyright 2023 Hereditary Neuropathy Foundation | 1641 3rd Avenue #28K New York, NY 10128 | Powered by. It is associated with causing and worsening neuropathy, especially if taken on an ongoing basis; however, the nerves that control respiration are not usually involved especially if the nerves to the limbs are not similarly affected. There is little research on the effects of vitamins on CMT. Novocaine allergy is extraordinarily rare. A salmon meal is another that is well within my comfort zone. There is no evidence, however, of true worsening of weakness or sensory function. My feet wake me up. The agent was placed on the list based on the experience with other types of patients receiving the drug as part of their chemotherapy. Pineapples: Pineapples come with papain and bromelain, i.e. Join the Global Registry for Inherited Neuropathies (GRIN) and help develop drugs, gene therapies, and clinical trials for CMT and other Inherited Neuropathies! While there are thoughts on how some of these medications work, how Neurontin stops pain is not clear. Email: [emailprotected] Wahls protocol is a modified Paleo diet, which may have benefits for some, but again may be too low in carbohydrates for others. The only agent in that group that has been questioned about a detrimental effect on CMT is Paxil (paroxetine). Focusing on a varied diet with adequate carbohydrates and a wide variety of fruits and vegetables will likely meet all of your micronutrient needs. Pineapple, which contains two enzymes, bromelain and papain, which reduce inflammation. what would be better than pairing pineapple slices with any low-fat cottage cheese to enjoy a Its a unique opportunity for our community to come together and celebrate and raise awareness and funds for CMT research. is 50 mg/day. However, the effect with all of the statins is rare and we are not advising patients to avoid statins, only to be aware of the association. 4 years ago due to some food allergies that my husband has I switched to a whole food plant based/healthy vegan way of eating. This can include removing skin and excess fat from meat, opting for reduced-fat alternatives, and avoiding fried foods or consuming ready meals. Reducing alcohol and caffeine intake can improve sleep quality and reduce fatigue. These are involved in transmitting nerve signals from the brain to the muscles to control movement, and sensory information from the rest of the body to the brain. According to our CMT experts, Botox is not recommended for individuals with CMT but can be used in areas that are not directly affected by CMT (the face, for example). How To Diagnose Charcot Marie Tooth & What Is The Best Medicine For It? The formulation is actually a collection of vitamins intended for patients with high homocysteine levels, an independent risk factor for heart disease and stroke. Aiming for foods with less than 5g sugar per serving and 5g fiber or more per serving is best. Yeah, dont believe the lies. Whooping cough vaccine is part of the dPT or dP routine vaccination. This class of medication is not known to affect CMT or cause neuropathy and is not contraindicated in CMT in general. Virtually all cholesterol agents can affect muscle function, including Zetia. I found Reformer Pilates really strengthened my lower legs & feet, has helped enormously with balancing also, eclipse machines, excercise bike & swimming using a kids paddle board & just kicking your legs will help takes nearly 8 months to really start noticing the difference but when you do its a huge confidence boost. Ive noticed the past three weeks Ive been dropping several items that I grab ahold of..its pretty scary. Not knowing allowed me to live life as I wanted and never stopped me. Ultimately, if you choose to take a lecithin supplement, you would be wise to consult your doctor in order to establish a safe dosage. Helpful patient care resources for the treatment & management of CMT. My go-to breakfast for the past week: chia seeds, coconut milk, pineapple, blueberries, toasted walnuts, and honey. Cow's Milk. Doses in excess of 50 mg/day are unlikely of added benefit to CMT patients. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Just eat healthy. Avoiding alcohol, Fluoride, coffee and eating organic has helped me. Excluding the aforementioned food items to eat, Charcot Marie Tooth patient should make sure to intake plenty of juicy fruits and veggies, along with protein-rich food items. The CMTA is a 501(C)(3) nonprofit organization, EIN# 22-2480896. The neurotoxic drug list was compiled by neurologists and is continually monitored for additions and corrections. Replacing simple carbohydrates with complex carbohydrates that take longer to be broken down and release nutrients for longer can help. Climbing the stairs is not required. While people with CMT generally suffer no ill effects from the moderate consumption of alcohol, they should be particularly mindful of the fact that alcohol affects balance and coordination, and that overconsumption of alcohol is generally not recommend under any circumstances. Smoked or processed meats, such as hot dogs, bologna, bacon, corned beef or smoked fish. Considering this fact, we should say that green tea is applicable for CMT patients, who have weak body muscles. The good thing for you is that now, if you get especially tired after doing something taxing, youll allow yourself to get fully rested before doing the next job without punishing yourself by trying to do too much. in fact, a single slice of pineapple contains 27calories with only 7grams of carbs. It has many uses including blood pressure control, heart disease, migraine prevention, and suppressing essential tremors. I was diagnosed with CMT last September. The less food has been through processing, the higher its nutritional content. The genetic defects in most demyelinating types of CMT are known, as are the encoded proteins and their functions. In fact, dont let it keep you from doing anything you want to do. This site is strictly a news and information website about the disease. Actually, they might be right. green leafy vegetables, such as spinach, kale, and collards. Chia and flax seeds were new to me. We just came to know about CMT in our son. I have not encountered any problems with CMT patients taking hormone therapy of estrogens or progesterone. I think I may have this disease? fruits such as strawberries, blueberries, cherries, and oranges. In 2001 and 2003, statutory changes to section 251 of the NHA, 12 U.S.C. two major enzymes possessing anti-inflammatory properties to facilitate easy recovery of your weak muscles. There does not appear to be a specific diet that helps or hinders those with CMT. As far as we know, there should not be any neuropathy concerns with this medication. Pensacola, FL 32502 Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Pickled or fermented foods, such as sauerkraut, kimchi, caviar, tofu or pickles. Others in this class of drugs, termed TNF-alpha blockers, but not this particular agent, have very rarely been associated with triggering other autoimmune disorders, including demyelinating neuropathy in a handful of instances. Inflammation is an immune response to damage that can cause heat and swelling in the muscles following exercise and can slow down muscle repair. Of course, if they dont actually need the statin, they should think carefully before using one. A Study on Neurotoxic Medications Some of these agents have been studied as treatments for neuropathic pain and showed no signs of making patients worse. It all helped. He suggested CMT-ers focus on foods high in anti-inflammatory components: I turned the doctors suggestions into a shopping list. The desirable way to consume sugar is through diet as it occurs naturally in fruits, vegetables, dry fruit, milk/milk product. Im 63 years old. Providing access to conduct Clinical Trials. And limiting dairy consumption. You mentioned fluoride? Some research suggests that fish high in omega-3 fatty acids (but not omega-3 supplements) are linked to a lower risk of gout flare-ups. Raw seafood: Oysters, most types of sushi, and other kinds of raw or undercooked seafood should be off the menu for now. I have no energy and stay sleepy These foods digest too quickly and cause a spike in your blood sugar. I know of no cases associating neuropathy with Aciphex to date, though neuropathy is listed in the company information as a very rare association (less than one in 1,000) from its clinical trials conducted before drug release. Broyhill Leadership Conference 2023 registration is open. I understand your fear after reading many varying posts, but dont let this fear for your future affect your outlook on life. For most women BMR is 1200-1500 calories per day; men are 1500-1800 calories per day. Oysters. The story of vaccinations and neuropathy is a long and controversial one. Naratriptan (Amerge) is a commonly prescribed migraine treatment in the triptan class and is similar to Imitrex (sumatriptan). [ 2 ] Coping Methods For Charcot Marie Tooth Disease. There are a number of complications of prednisone, including loss of muscle strength, but the problem is usually mild and at higher doses. clearing any trip hazards from your home and taking particular care on uneven ground can all help you avoid falls. It may be downloaded here: Full_Medical_Alert_List.pdf, A printable card may be downloaded here: Medical_Alert_Card.pdf. You will live a long life. I am aware of only one reference to peripheral nervous system toxicity and topical creams/ointments. 3 W Garden St Some theorize that drugs that interfere with fat metabolism may disrupt normal muscle function in a small percentage of patients ranging from one in a 100 to one in 1,000, depending on the agent. All of the data that Im aware of is from laboratory cultures or rat nerves and models, not humans. This classic exclamation statement from Shania Twain is one for the country music history books . The two used for bacterial infections with the most convincing link to neuropathy are metronidazole (Flagyl) and nitrofurantoin (Macrodantin, Furadantin, Macrobid). Got milk? I dont have a recipe. There is no evidence that injections will worsen the overall condition. I eat a lot of microwave frozen. Charcot-Marie-Tooth Association You can find it in egg yolks, tuna, fortified cereal and milk, mushrooms, sardines, and salmon. Consuming foods that are high in fat limits the growth of good bacteria in your gut. Cant say enough about how much it has helped me. There were a few scattered suspicions with Tagamet but not Zantac. [ 1, 2] These disorders are also known as hereditary motor and sensory neuropathies (HMSNs); they are distinct from hereditary sensory neuropathies (HSNs) and hereditary motor . It is a theoretical issue whether patients with CMT should avoid statins, as there is no evidence that statins worsen existing neuropathy. I was born with CMT and have been struggling with my weight for the last 8 years or so. Guillain-Barr syndrome (GBS) can occur in CMT patients, but there is no consensus on whether the incidence is higher than for the general public. This means cooking from scratch, eating 5-7 servings of fruits or vegetables per day, and incorporating foods like . Five years after arriving home from my three-year RTW cycle, I've finally written a book! The index originally used by HUD was the U.S. It may also enhance the risk of seizures in susceptible individuals. Keto has helped me stabilize my body and I train 6 days a week in the gym with no ill side effects except growth in muscle. Those, he said, can make CMT symptoms worse. Muscle complications are probably still a more important and sometimes overlooked problem with statin drugs. There is no information about a positive or negative reaction from a patient with CMT with any of these treatments. Adriamycin is occasionally reported to cause neuropathy, but not with the frequency or severity of some other chemotherapy drugs such as vincristine, Cisplatin, suramin, and taxol. I noticed a decline in the last few years, but I attributed everything to the aging process. Charcot-Marie-Tooth, or CMT, is the most commonly inherited peripheral neuropathy and is found worldwide among all races and ethnic groups. Weight maintenance is also important in order to maximize your ability to move your body pain-free and with as little fatigue as possible. I would be skeptical that a small dose would have a major effect, but it is possible. We need YOU! I use one part chia seeds to a little more than four parts liquid. My 7 year old granddaughter was diagnosed with CMT in the spring. Eliminate food with trans fats and other bad fat. However, the risk is likely very small in general, depending on which muscles are injected. Avoid foods that contain chilies, cayenne pepper, pepperoni pizza, and fast foods. It does not provide medical advice, diagnosis ortreatment. Join the movement to make a difference for those living with Charcot-MarieTooth (CMT). HNF is a 501(c) 3 public charity enabling donors to support our mission safely. She has been to Neurologist, orthopediac surgeon Physio and ot and have some guidance but the disease is progressing more rapidly than they thought. When you have CMT it is important to make sure youre eating enough carbohydrates for your muscles to have a steady fuel source, but too many simple carbohydrates can make you feel more tired. Please advise for food, medicine, alternative treatments, stemming cell therapy etc. My feet cramp. Even if you are somewhat imobilized, many have chair lifts to get you into and out of the pool. I have a recumbent bike at home that I ride every day along with other exercises. The related drug lansoprazole was reported in 2005 to cause neuropathy in one patient. Studies by the manufacturer did not seem to uncover cases of muscle problems, but there are now a handful of reports, though not well-documented, with this drug as well. One slice contains 27 calories, 0 grams of fat, and 7 grams of carbs. The statin drugs are safe for most patients with CMT. Sous-vide salmon, spinach, arugula, flax seeds, tomatoes, celery, toasted walnuts, and roasted beets. How was the diagnosis process? We are grateful for your generosity in supporting our mission! This new round of concern is based on a single large study in Denmark that found that people who had neuropathy with no known cause were more likely to be taking a statin. It is not known whether CMT patients are affected differently or why some patients are affected and not othersnone of the reported cases were patients with CMT. The process, in general, lasts for one to four weeks and then improves depending on the severity of the process. olive oil. Protein is necessary but shouldnt be consumed excessively, as this can lead to weight gain. There is no neurological reason for that symptom. (Photo by Young Lee). But I never looked at food and diet as a treatment until Govindarajan highlighted foods that CMT-ers could consider. The vaccine was studied in about 38,500 adults, half of whom received the vaccine; the subjects were followed for an average of 3 years. "Choosing foods that keep your blood sugar in a safer range, as well as avoiding the ones that don't, helps reduce your risk of your condition progressing and developing complications." So which foods are fine to eat freely, and which should you avoid? We follow a strict editorial policy and we have a zero-tolerance policy regarding any level of plagiarism. Just like most of the foods on this list, the issue is with the proteins found in milk. You should reduce your caffeine and alcohol intake to improve the quality of your sleep and in turn, reduce tiredness and fatigue. People who are most likely to have low potassium levels include: Those who take diuretics in order to treat high blood pressure or heart disease For those patients, we must be concerned about vaccinations. If the CMT patient has a common reaction to an immunization, the problem will be transitory. The CMTA at this point does not recommend lecithin supplementation, but there are reputable web sites that give approximate doses for treatment of other conditions, like high cholesterol. Low impact, moderate exercise is very helpful. Vinblastine is closely related to vincristine. Food provides energy for all cells in the body, and the types and amounts of certain foods can influence the way your body uses that energy. There are a few drugs that rarely cause neuropathy, but there is not enough experience to recommend avoidance or a special susceptibility by CMT patients. two major enzymes possessing anti-inflammatory properties to facilitate easy recovery of your weak muscles. Anti-inflammatory foods. 1. You should reduce the intake of fatty, salty and sugary drinks or food items wherever it is possible. He also needs the advice of a neurologist regarding the CMT. Calories are provided by the macronutrients which are carbohydrates, protein, and fat. Sign up now! Tea. The combination of this drug and a statin may have added toxicity but this fact is not well established. Most people with this risk take daily folic acid supplements and this formulation appears to be an attempt to supply a more complete but unproven formulation. Your email address will not be published. Wish there was an easy guide for genetic testing? 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