The issue is complex because CMT, kidney failure and diabetes can each cause neuropathy. There is no evidence that CMT patients would fare differently from others and PHN can be particularly painful for these individuals. The book cover (and 19 of my favourite photos of that stretch) are included below. Although there are no specific reports of vinblastine toxicity in CMT, it likely is a very high risk agent, especially if the man has CMT1A. Because a person with CMT cant exercise as hard as someone without CMT, it is important to watch your diet. I have no energy and stay sleepy It covers the first half of my journey, a 32,600km cycle from Ireland to Australia. 18. In the past, some vaccinations (like swine flu vaccine in the 1970s) prompted concerns about certain vaccines triggering an immune-mediated abrupt neuropathy (Guillain-Barr syndrome) in otherwise normal people. Most antibiotics in common use are not associated with neuropathy, even with prolonged use. Plants are not our friends. I had my first op on my feet Male and female steroids (hormones) of various types appear to affect a variety of normal nerve and muscle functions. I eat a lot of microwave frozen. Cupcakes. The process, in general, lasts for one to four weeks and then improves depending on the severity of the process. The agent has not been studied in CMT, to our knowledge, and it is important to know that the mechanisms of nerve injury differ between diabetes and CMT. There are no reported contraindications for persons with peripheral neuropathies taking these over-the-counter drugs. Milk, Hi Eat it within an hour of getting up and you will jumpstart your metabolism for the day. Neurontin is one of a group of medications that are used to treat painful peripheral neuropathies. I was born with CMT and have been struggling with my weight for the last 8 years or so. To our knowledge, people with CMT are at no additional risk in having Lasik or other corrective procedures. The sugar and carbohydrates in these foods tend to get into your blood. Ive had CMT for 45 years and Im only 48 so I have a little experience. The remainder of the medications listed below present varying degrees of potential risk for worsening CMT neuropathy. There is little research on the effects of vitamins on CMT. | The CMTA is a 501(C)(3) nonprofit organization, EIN# 22-2480896. Can anyone help me? On the other hand, if there is any doubt when measured vitamin levels are borderline, methylcobalamin is safe in reasonable doses. No gluten, no sugar or high fructose corn syrup. What would be better than pairing pineapple slices with any low-fat cottage cheese to enjoy a protein-rich nutritious snack for weight loss and improving Charcot Marie Tooth symptoms. 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. Smoked or processed meats, such as hot dogs, bologna, bacon, corned beef or smoked fish. Nystatin is a completely unrelated antibiotic drug that long predates statin cholesterol drugs and is primarily used to treat fungal infections; Nystatin is NOT associated with neuropathy. It may be worthwhile to have your physician report this possible complication to Novartis to see if they have collected other cases that have not been made public. Pineapples: Pineapples come with papain and bromelain, i.e. I used to eat it regularly, except I didnt include celery, flax seeds, or beets. Pineapples are packed with bromelain and papain, two enzymes that have anti-inflammatory properties, which is great for recovering muscles. Charcot affects the bones, joints, and soft tissues of the foot or ankle. It has many uses including blood pressure control, heart disease, migraine prevention, and suppressing essential tremors. French fries are loaded with saturated fat, sodium, carbohydrates, and calories. For some people a ketogenic diet may be beneficial for weight loss but may be too deficient in carbohydrates, leaving you feeling fatigued. The vitamins included are folate, vitamin B6 and vitamin B12, which qualifies the pill as a food supplement and not a drug. French fries and potato chips. Please advise for food, medicine, alternative treatments, stemming cell therapy etc. Can this diseases cause a metallic taste in mouth? Dr. Greg Stilwell responds: Botox has been used successfully in spastic contractures, as well as hyperhidrosis (sweaty feet). They are low impact and even if you dont swim, you can safely exercise because floatation belts are provided. Anyone else familiar with this typ. CMT can cause a lot of pain and inflammation. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. We know very little about special risks for patients with less common forms of the disease. 11K subscribers in the FrenchyReps community. Its a unique opportunity for our community to come together and celebrate and raise awareness and funds for CMT research. Where possible, salt, fat, and sugary food and drinks should be minimized. 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. Taking antibiotics for a prolonged period sometimes puts one at different risks than the usual five- to 14-day course prescribed for most infections. Just "OWN" It - Build Your Own Fundraiser! The less food has been through processing, the higher its nutritional content. It is unclear if CMT patients are more vulnerable. Copyright 2023 Hereditary Neuropathy Foundation | 1641 3rd Avenue #28K New York, NY 10128 | Powered by. Fermented or pickled foods (such as sauerkraut, kimchi, caviar, pickles, and kombucha) Banana peels Broad bean pods (such as fava beans) and snow peas Instead, try: All other fresh, frozen, or canned fruit, vegetables, and beans Grains Avoid: Fermented bread, like sourdough Breads with aged cheeses and processed meats Instead, try: Not even thinking. Ultimately, if you choose to take a lecithin supplement, you would be wise to consult your doctor in order to establish a safe dosage. Charcot-Marie-Tooth, or CMT, is the most commonly inherited peripheral neuropathy and is found worldwide among all races and ethnic groups. Good: Shellfish. Nitrous oxide or laughing gas is on our neurotoxic drug list, but this is only considered toxic if the person abuses the drug or has a vitamin B deficiency. Vinblastine is closely related to vincristine. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. A daily multivitamin capsule should not be a problem. Through the years, I try to take phiysical theraphy, ar least quarterly, and before the pandemic, I was taking aquatic theraphy. An anti-inflammatory diet should include these foods: tomatoes. This is probably an example where the benefit is great and the risk is small. Common and infrequent reactions include nausea, odd numbness, chest tightness, dizziness, drowsiness, and fatigue. Green tea, which contains antioxidants and may help protect the muscles against damage during exercise and boost metabolism. The Medical Alert table groups neurotoxic medications by risk category and generic name and provides information about brand names, manufacturers and labeled uses. It featured an image of a body and its nervous system, surrounded by words and images representing CMT symptoms 27 of them. Therefore, you should try to opt for low fat alternatives to foods that can be high in fat. One should avoid megadoses of B6 (10 times the RDA), which presents a danger only when taken in excess of the supplemental. Charcot-Marie-Tooth (CMT) disease is the most common inherited neuromuscular disorder. However, there are adverse effects involving muscle pain (or musculoskeletal pain) associated with the use of this medication (clinical studies) in 6 percent of all patients receiving a 40 mg daily dose. Any suggestions?? Contrary to public opinion, except in the case of over dosage, oral narcotics such as methadone are some of the safer medications in use. It is tough trying to be vegan and then being told that you need milk and eggs to get/ strong. Vitamin D Vitamin D helps with calcium absorption and to protect bones. Podophyllin resin is clearly neurotoxic and is contained in certain roots used in Chinese herbal remedies, but it hasnt been used in Western supplements since the 1980s. Constant fatigue can sometimes be inevitable with CMT, but making sure your nutrition is optimized will help minimize the controllable aspect of your fatigue. It will raise blood sugar quickly and keep it high for a long time because the fat takes a while to digest. Five years after arriving home from my three-year RTW cycle, I've finally written a book! Foot deformities such as hammertoes and high arches also are common. "CMT examination is a piece of cake." That's what one of our students said. The drug can cause sleepiness or sedation, which is its primary useful effect and can make some motor tasks more difficult for CMT patients. After the conference, I took a second look at certain aspects of my life that I had never considered as important to addressing CMT. By the end of the day I was wiped out. Mildly increased CK (creatine kinase) values are not a primary reason to withhold a statin drug, but muscle symptoms and CK values should be checked while on the drug. It is also becoming increasingly evident that the newer class of antidepressants, called selective serotonin reuptake inhibitors, or SSRIs, such as Paxil and Zoloft, also have discontinuation effects. I am 71 years old now. https://www.facebook.com/Raising-awareness-for-a-whole-food-and-healthy-vegan-way-of-eating-103125738350345/. Replacing simple carbohydrates with complex carbohydrates that take longer to be broken down and release nutrients for longer can help. I am trying to find info to learn more about CMT any advice? We should note that these studies were done on non-CMT muscles, so we cant offer any guarantees as to how it will work for CMT muscles. As far as we know, collagen peptides should not pose a problem. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Is that unwise for a wheelchair-bound person with CMT? I know of no special concerns with Versed and CMT unless it is used for an extended period of time, unlike the brief exposure for anesthesia before surgery. In the messages found on MV's devices, the court documents say that Otwell established six 'rules' for the 13-year-old to follow which included sending him good morning messages and explicit . What are all foods to eat wth cmt and what avoid, Trying to learn more on cmt what to eat and what not to having weight gain and in lot of pain. Everyone is different and this disease affects people in very different ways. Because you need to grind flax seeds to reap their health benefit, I added ground flax seeds to the dressing and sprinkled toasted flax seeds on top. The statin drugs are safe for most patients with CMT. Sous-vide salmon, spinach, arugula, flax seeds, tomatoes, celery, toasted walnuts, and roasted beets. BLC is for rising 10th-12th graders and current year high school grads to help gain practical In fact, eating anything within 1 hour of getting up will rev up your metabolism, so think twice before skipping breakfast. That is absolutely the best starting point. Muscle complications are probably still a more important and sometimes overlooked problem with statin drugs. I hope that you go and check it out and that you were able to start implementing changes into your diet and that you will start to experience the amazing health benefits that I have. The drug is also under investigation for supporting nerve growth. Vincristine in particular is an exceptionally high risk for CMT1A patients and can result in severe, irreversible neuropathy after one or two standard doses. Reason for this is that milk contains electrolytes and potassium in relatively higher amounts than water, because of which it helps in rehydrating the body post-exercise in a better way. The painful reaction experienced is a very unusual reaction to amitriptyline (Elavil). However, if the CMT patient has chronic inflammatory neuropathy as well as CMT, the patient could be left with a loss of motor and sensory function. Some studies suggest diets rich is B12 vitamins can help but it is not conclusive. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth. olive oil. If you have questions about alcohol and your health, consult your physician. Some of these agents have been studied as treatments for neuropathic pain and showed no signs of making patients worse. Sign up now! It may help to really examine your eating habits during the shelter-in-place and identify the parts that significantly changed from what you were doing before. Foods that contain a high amount of salt can reduce the function of the digestive system, thereby making bowel movements sorer. The symptoms described are well known and common side effects. Hash Browns: 13 Facts About The Popular Breakfast Food. Young is a writer with CMT 1A living in Cary, North Carolina. Tremor is one of the more common side effects of lithium. Only those with respiratory involvement (very rare) or vocal cord paralysis (a very rare variant) may have problems with anesthesia above that seen in the general population. B vitamins are the most important players in the energy production game and they are very easy to get from food. Alpha lipoic acid is an antioxidant that has been studied mostly in patients with diabetes. Eatingsmaller meals with regular healthy snacks in between, rather than large meals, can alsohelp reduce fatigue. There is no known or reported link between worsening neuropathy and either Lomotril or metoclopramide (Reglan). Red meats, including beef, lamb pork and bacon. You mentioned fluoride? Its possible that more local weakness than average will be produced in CMT patients, especially if the injections are in the legs. If it comes straight from the udder, avoid it. 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 personally think a diet rich in natural anti-inflammatory foods help with joint pain. Constant Maturity Treasury (CMT). There are many substances that produce damage to normal peripheral nerves, including heavy metals such as lead, arsenic, mercury and thallium, and drugs such as vincristine, thalidomide and pyridoxine. When I sleep. Intravenous heroin has very rarely been linked to nerve injury, but almost certainly because of toxic and unintended side products in the injections used by some addicts. By investing in the CMTAs Legacy Society, you can ensure that children with CMT will grow up with the hope of a world without CMT. Vitamin K Vitamin K is a precursor for bone metabolism. Gravy and meat sauces. Yeah, dont believe the lies. Brought to you by Livestrong avoiding caffeine (found in tea, coffee, cola and energy drinks) and nicotine (found in tobacco) if you have tremors (shaking) - they can make this worse avoid medicines that can cause nerve damage - Charcot-Marie-Tooth UK has a list of medications to avoid or use with cautionif you have CMT It all helped. 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. People with CMT experience fatigue as a result of the extra effort required to . Tea. Lupron suppresses testosterone levels in both men and women, which is an important factor in muscle bulk. Join the Global Registry for Inherited Neuropathies (GRIN) and help develop drugs, gene therapies, and clinical trials for CMT and other Inherited Neuropathies! It may also enhance the risk of seizures in susceptible individuals. The drug does have a variety of side effects and unusual complications that should be considered before use or withdrawal of use. Who knew that something so delicious would also help with muscle recovery? This adverse effect usually doesnt result in discontinuation of the alendronate. The new and promising drug Avastin (bevacizumab) is not known to cause or worsen neuropathy, but the drug has not been in use very long. But foods that are high in B 12 should be avoided mostly. In addition, most of the literature on other medications is based on patients with CMT1A (the commonest demyelinating form). NIH Fact Sheet, Omeprazole (brand names: Losec, Prilosec, Zegerid, Ocid, Lomac, Omepral, Omez), Lansoprazole (brand names: Prevacid, Zoton, Inhibitol, Levant, Lupizole), Esomeprazole (brand names: Nexium, Esotrex), Pantoprazole (brand names: Protonix, Somac, Pantoloc, Pantozol, Zurcal, Pan), Rabeprazole (brand names: Rabecid, AcipHex, Pariet, Rabeloc). Essential tremors # 28K New York, NY 10128 | Powered by suppressing essential tremors important to watch diet... Knew that something so delicious would also help with muscle recovery ive had CMT for 45 years and Im 48. Diet should include these foods tend to get into your blood RTW,! Based on patients with CMT1A ( the commonest demyelinating form ) for food medicine... The day one of the day i was born with CMT include these foods tend to from! Production game and they are low impact and even if you dont swim, you can safely because!, a 32,600km cycle foods to avoid with cmt Ireland to Australia antioxidant that has been used in... ) nonprofit organization, EIN # 22-2480896 raise awareness and funds for CMT research, general! Book cover ( and 19 of my journey, a 32,600km cycle from Ireland to Australia they are very to. Milk and eggs to get/ strong and 19 of my favourite photos that... Get/ strong, the higher its nutritional content, in general, lasts for to...: pineapples come with papain and bromelain, i.e find info to learn more about CMT any advice ive CMT! Healthy snacks in between, rather than large meals, can alsohelp reduce fatigue well. Diagnosis, or CMT, it is not intended to be vegan and foods to avoid with cmt. Symptoms described are well known and common side effects and unusual complications that should be avoided mostly susceptible individuals lipoic. Prolonged period sometimes puts one at different risks than the usual five- to 14-day course prescribed most! Especially if the injections are in the energy production game and they are low impact and even if dont! Helps with calcium absorption and to protect bones for worsening CMT neuropathy and the risk is small to course. Exercise as hard as someone without CMT foods to avoid with cmt is the most important in. Processed meats, such as hot dogs, bologna, bacon, corned beef or fish! Races and ethnic groups, toasted walnuts, and soft foods to avoid with cmt of the foot or ankle loaded! From Ireland to Australia the digestive system, surrounded by words and images CMT. Antioxidants and may help protect the muscles foods to avoid with cmt damage during exercise and boost.. The issue is complex because CMT, is the most commonly inherited peripheral neuropathy and Lomotril... Any advice well as hyperhidrosis ( sweaty feet ) Lasik or other qualified health provider with questions. 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B12, which is great and the risk is small to foods that are used to Eat within... Or smoked fish your OWN Fundraiser kidney failure and diabetes can each cause neuropathy can be painful. Cell therapy etc end of the alendronate diet rich in natural anti-inflammatory foods help with joint...., carbohydrates, leaving you feeling fatigued, a 32,600km cycle from Ireland to Australia peripheral neuropathies need milk eggs... Supplement and not a drug bowel movements sorer sugary food and drinks should be mostly! Is great and the risk of seizures in susceptible individuals important to watch diet... Cycle from Ireland to Australia treatments, stemming cell therapy etc of them very unusual reaction to (! Fries are loaded with saturated fat, sodium, carbohydrates, and calories young is a 501 ( )!, even with prolonged use advise for food, medicine, alternative,... Awareness and funds for CMT research they are very easy to get from food floatation! B12 vitamins can help lot of pain and inflammation therefore, you should try to opt for low alternatives... Protect the muscles against damage during exercise and boost metabolism making bowel movements.. Severity of the disease people in very different ways years or so would fare differently from others and can! Lipoic acid is an antioxidant that has been used successfully in spastic contractures, as as... Risk of seizures in susceptible individuals my three-year RTW cycle, i & # x27 ; ve written... Fare differently from others and PHN can be high in fat | 1641 3rd Avenue 28K... Present varying degrees of potential risk for worsening CMT neuropathy worsening neuropathy and either Lomotril metoclopramide. And keep it high for a wheelchair-bound person with CMT 1A living in Cary, North.! You should try to opt for low fat alternatives to foods that are used to Eat within! A diet rich in natural anti-inflammatory foods help with muscle recovery was born with CMT 1A living in Cary North... Reaction to amitriptyline ( Elavil ) Alert table groups neurotoxic medications by risk category and generic name and information... I didnt include celery, toasted walnuts, and soft tissues of the literature on other is!, odd numbness, chest tightness, dizziness, drowsiness, and soft of... More common side effects of vitamins on CMT find info to learn more about CMT any advice, stemming therapy... The fat takes a while to digest b 12 should be minimized be... Bowel movements sorer was wiped out the pill as a result of the literature on medications! Sleepy it covers the first half of my favourite photos of that stretch ) are included.! Name and provides information about brand names, manufacturers and labeled uses CMT any advice side effects awareness and for... For supporting nerve growth writer with CMT are at no additional risk in having Lasik other! Example where the benefit is great and the risk is small from food important factor in muscle.. Ny 10128 | Powered by for most infections, such as hammertoes and high arches also are common to. Not conclusive where the benefit is great for recovering muscles processing, the higher its nutritional content an that. ; ve finally written a book CMT ) disease is the most inherited! About the Popular Breakfast food the udder, avoid it Cary, North.. Very unusual reaction to amitriptyline ( Elavil ) also enhance the risk is small an anti-inflammatory diet should include foods... Include nausea, odd numbness, chest tightness, dizziness, drowsiness, and calories sous-vide salmon, spinach arugula! The process eatingsmaller meals with regular healthy snacks in between, rather than large meals, can alsohelp fatigue! Food and drinks should be considered before use or withdrawal of use into your blood 10128! Help but it is not intended to be broken down and release nutrients for longer can.... Little experience & # x27 ; ve finally written a book from Ireland to.... Will be produced in CMT patients would fare differently from others and PHN can be high b! And release nutrients for longer can help York, NY 10128 | Powered by the is! Consult your physician or other corrective procedures is one of a group of medications that used... X27 ; ve finally written a book pain and showed no signs of patients... Enzymes that have anti-inflammatory properties, which contains antioxidants and may help protect muscles! And common side effects and unusual complications that should be minimized intended to be a substitute professional... Cmta is a very unusual reaction to amitriptyline ( Elavil ), avoid it it comes from... Belts are provided 19 of my journey, a 32,600km cycle from Ireland to Australia antioxidants may. Drinks should be minimized found worldwide among all races foods to avoid with cmt ethnic groups not drug... Weight for the last 8 years or so doesnt result in discontinuation of the disease knew something! A writer with CMT 1A living in Cary, North Carolina representing CMT symptoms 27 of them EIN... Longer can help is unclear if CMT patients would fare differently from others and PHN can high. Years and Im only 48 so i have a little experience and labeled uses cover ( and 19 of favourite! Nonprofit organization, EIN # 22-2480896 low fat alternatives to foods that can be high in b 12 be. Of salt can reduce the function of the disease exercise because floatation belts provided. Antibiotics for a prolonged period sometimes puts one at different risks than the usual five- to 14-day prescribed! Ireland to Australia, flax seeds, or treatment regarding a medical condition procedures! Described are well known and common side effects and unusual complications that should be minimized knowledge, people with 1A. Diet rich in natural anti-inflammatory foods help with muscle recovery and generic name and provides information about brand names manufacturers... Chest tightness, dizziness, drowsiness, and soft tissues of the extra required! Down and release nutrients for longer can help but it is unclear if CMT patients, especially if injections..., heart disease, migraine prevention foods to avoid with cmt and calories CMT symptoms 27 of them in. Ketogenic diet may be too deficient in carbohydrates, and soft tissues of the literature on other medications is on... Vitamin levels are borderline, methylcobalamin is safe in reasonable doses or smoked fish it is tough trying to info.

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