Not knowing allowed me to live life as I wanted and never stopped me. That is hard to say. Positively, you may easily manage your body weight and other major Charcot Marie Tooth symptoms by simply having a healthy yet balanced diet combined with a tailored exercise plan.(1). Even though eggs have suffered from a bad reputation for a long time, they have finally started to make a comeback. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Foods such as halibut, nuts, nut butters, spinach, potatoes with skin, black-eyed peas, and spinach are rich in magnesium. Temps were in the mid/90s. Eat it within an hour of getting up and you will jumpstart your metabolism for the day. So, the risk for two weeks of treatment is minimal, but some concern is called for if the treatment extends more than a month. This article on Epainassist.com has been reviewed by a medical professional, as well as checked for facts, to assure the readers the best possible accuracy. However, if you are Vitamin D deficient, discuss supplementation with your doctor. Foods high in salt (sodium), such as some canned foods, processed meats (e.g., lunch meats, sausages, hot dogs, ham), and frozen dinners should be avoided. All of the data that Im aware of is from laboratory cultures or rat nerves and models, not humans. Email: [emailprotected] From unhealthy fats to artificial sweeteners, these picks don't pack much nutrition. Give a copy to your physician and any other medical professional who is involved in your care and treatment. "CMT examination is a piece of cake." That's what one of our students said. I knew that walking was getting harder and harder as a form of exercise and Im grateful that Ive found other forms of exercise that help me be a stronger person and keep my stamina up. However, there's one food people should avoid when taking their daily statin. 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 recommended under any circumstances. I can barely walk anymore. Doses in excess of 50 mg/day are unlikely of added benefit to CMT patients. A diet rich in folate may also contribute to increased serotonin levels. Vinblastine also causes neuropathy in individuals without existing neuropathy. Low impact, moderate exercise is very helpful. I suffer daily with chronic pain. One problem is that the full ingredient list in some herbal supplements is not available, accurate or required. 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. Vincristine in particular is an exceptionally high risk for CMT1A patients and can result in severe, irreversible neuropathy after one or two standard doses. I do not know of any documented case of someones CMT worsening because of birth control pills or HRT. However, a healthy diet is always good and this list of foods may help you optimize your exercise sessions while also helping you lose weight. Some studies suggest diets rich is B12 vitamins can help but it is not conclusive. Zetia can cause toxicity to the liver, especially in patients that already have liver problems, such as chronic hepatitis C. An internist or gastroenterologist would be better to consult about these hepatic (liver) issues. by Courtney | Apr 13, 2016 | Living with CMT, Nutrition | 1 Comment. Other drugs on the medication list have less clear associations with CMT and excessive toxicity. The added chocolate helps with muscle recovery by balancing the carbs, protein, and fat. The other consideration is that infection, usually bladder infection, can cause shortness of breath if it spreads. You can find it in egg yolks, tuna, fortified cereal and milk, mushrooms, sardines, and salmon. I do not know the relative risk in this setting that appears to be separate from CMT. This includes their juice and other products that are mostly made from these, for example marmalade. Unfortunately, none of these medications work all the time for all patients; some work for some patients, others work for other patients. Three small portions of dairy a day, especially reduced-fat versions, are also important. Some snack foods and store-bought packaged toddler foods are high in salt. I went to PT for 6 months. Everything you put into your body needs to do double duty, whether it is increasing metabolism, lowering cholesterol, or helping your muscles recover faster after a workout. 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 In fact, dont let it keep you from doing anything you want to do. No gluten, no sugar or high fructose corn syrup. There are a number of similar cases in the literature of patients without known CMT receiving vincristine and developing severe neuropathy after one or several courses, then later discovering a close relative with known CMT. The drug can cause sleepiness or sedation, which is its primary useful effect and can make some motor tasks more difficult for CMT patients. The vitamin B 12 can make people with CMT show their weaknesses more and come out and different ways. No, but it is advisable to eat healthily and avoid excessive weight gain. I am not aware of any problem with Propofol as an anesthetic in CMT patients. How was the diagnosis process? Thank you to the many faces and families who have chosen to share their stories and fundraise for their rare subtype of CMT. The effects of progesterone on CMT1A are still investigational. Others used for viral infections (HIV agents, wart virus) fungal infections (griseofulvin), and parasitic infections (malaria) are usually considered separately. Soda. only in hospital or ambulatory care settings, including physicians offices, that provide for continuous availability of resuscitative drugs and equipment and personnel trained in their use. This would apply to any patient. Is there anyone with C.M.T that lives in or near Waukesha Wi? The drug is also under investigation for supporting nerve growth. At my age now, I have develop osteoarthritis, 2 right hip replacements, and last few years the neuropathy in my feet is unbearable. The use of interferon in the treatment of hepatitis C was a major advance a number of years ago, but the treatment has had notable side effects, most commonly flu-like symptoms. There is no risk of withdrawal effects and the skin rash described is more indicative of a drug allergy or a separate viral illness, but a physician should examine the rash to be sure. Join the movement to make a difference for those living with Charcot-MarieTooth (CMT). Inderal is not associated with causing or worsening neuropathy or CMT. PO Box 105 He also needs the advice of a neurologist regarding the CMT. It is recommended that CMT patients consume plenty of fruit, vegetables, and protein, such as lean meats, fish, and pulses (beans, lentils, and other legumes). As with any treatment with possible toxicity, the relative risks and benefits need to be weighed. Description of the most prevalent types of CMT. Diseasemaps 2023, LOOKING FOR PEOPLE WHO LIVE IN PHOENIX ARIZONA. Muscle relaxers like Soma should not affect your nerves or strength, but may cause sedation or sleepiness. It's been my bible and beacon of hope for managing my CMT symptoms. Sign up now! I think what helps me that this cmt2 is so slow advancing in my case. I often have this problem. Built to get you more shares and more followers. Pastries, cookies, and other treats with refined sugar are low in fiber . Good: Shellfish. There is no evidence that Vitamin D is helpful in alleviating the symptoms of CMT. The two used for bacterial infections with the most convincing link to neuropathy are metronidazole (Flagyl) and nitrofurantoin (Macrodantin, Furadantin, Macrobid). Pineapples are packed with bromelain and papain, two enzymes that have anti-inflammatory properties, which is great for recovering muscles. Raw seafood: Oysters, most types of sushi, and other kinds of raw or undercooked seafood should be off the menu for now. There is also another class of older stomach acid medications called H2 blockers that includes prescription and over-the-counter drugs, including ranitidine (Zantac) and cimetidine (Tagamet). Focusing on food sources of complex carbohydrates such as beans, legumes, fibrous fruits, whole grains, starchy vegetables and dairy is a better way to get your carbohydrates without a sugar crash. Older antidepressants like tricyclic antidepressants and monoamine oxidase inhibitors have been known to cause discontinuation effects. 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: http://www.angelfire.com/mi2/chip/cmt.html. is strictly a news and information website about the disease. Learn about how to identify your trigger foods: Charcot-Marie-Tooth, or CMT, is the most commonly inherited peripheral neuropathy and is found worldwide among all races and ethnic groups. Certainly, the underlying problems of CMT, Charcot joint, arthritis and spine disease must also be considered by your physician. 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. If the man has another form of CMT, the risk is less clear but certainly the oncologist should consider whether other equivalent drugs are an option. Taking antibiotics for a prolonged period sometimes puts one at different risks than the usual five- to 14-day course prescribed for most infections. The cardiologist should be aware of any EKG changes. Perhaps it is because people who eat more protein tend to burn more calories a day 71 calories a day to be exact, according to British researchers. CMTA-STAR Research for Axonal Forms of CMT, CMTA-STAR Research for Demyelinating Forms of CMT, Research in CharcotMarieTooth Disease Type 1A (CMT1A), A Guide to Physical and Occupational Therapy for CMT, CharcotMarieTooth Disease and Breathing Problems, Exercise and Physical Therapy for Inherited Neuropathies, Physical Therapy and Exercise: Getting the Right Dose, GoGo Stik Makes Scooping Dog Poop Easy and Safe, Breakthrough Guide to Orthopedic Surgery for CMT, How to Decide If Foot Surgery Is Right for You, Surgical Correction of the CMT Foot, Part 2: Tendon Transfers, Click here for an in-depth summary of a study on neurotoxic medications, Taxols (paclitaxel, docetaxel, cabazitaxel), Metronidazole/Misonidazole (extended use), Nitrofurantoin (Macrodantin, Furadantin, Macrobid), Nitrous oxide (inhalation abuse or Vitamin B12 deficiency), Pyridoxine (Although megadoses [10 times or more the RDA] of Vitamin B6 may be harmful, high intakes of vitamin B6 from food sources have not been reported to cause adverse effects.) This leaner meat is nonetheless high in purines. I was born with CMT 1a in 1966 but not officially diagnosed until 31 yrs later at Walton Neurosurgical Centre, Liverpool. Dr. Florian Thomas is a neurologist with expertise in Charcot-Marie-Tooth at Hackensack University Medical Center and Hackensack Meridian School of Medicine at Seton Hall University. As a child and young adult I had a high metabolism and never had to worry about my weight (even with my disability). "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? Our articles are resourced from reputable online pages. I feel like it's helped before (I was on it for 6 months), but we'll have to see where it goes now. Please advise for food, medicine, alternative treatments, stemming cell therapy etc. In fact, a single slice of pineapple contains 27calories with only 7grams of carbs. Weight maintenance is also important in order to maximize your ability to move your body pain-free and with as little fatigue as possible. Cymbalta (duloxetine) is one of the few medications that went through the lengthy process to receive FDA approval for neuropathic pain, specifically for diabetic neuropathy, but is generally used for any type of neuropathy-associated pain. Midazolam (Versed) is a medication used to assist in the sedation, reduction in anxiety, and impairment of memory in patients undergoing procedures (including endoscopies). The neurotoxic drug list was compiled by neurologists and is continually monitored for additions and corrections. However, the drug appears to be intolerable to this patient and probably best avoided. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. At this point, there is no diet that has been proven to show improvement in CMT symptoms or disease process. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Ezetimibe (Zetia) is the first of a new class of antihyperlipidemic agents, the cholesterol-absorption inhibitors. Through the years, I try to take phiysical theraphy, ar least quarterly, and before the pandemic, I was taking aquatic theraphy. In fact, the most common preventative dose used with other medications such as I.N.H. Avoid processed foods as much as possible. Black beans, lentils, chickpeas, pinto beans and soybeans are all great sources of anthocyanins - that magical flavonoid that reduces inflammation. Shania's new album "Queen of Me" is out now! Im 67 and was just diagnosed with CMT. 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. I was diagnosed with CMT last September. How did I go to sleep with my shoes on? 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 is no secret that millions of people struggle with their weight. It is a theoretical issue whether patients with CMT should avoid statins, as there is no evidence that statins worsen existing neuropathy. I didnt have any shoes on. Is There A Surgery For Charcot Marie Tooth Disease? I grew up eating bok choy, garlic, ginger, chicken, and broth. Your email address will not be published. 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. A good occupational therapist may recommend some tools to facilitate hand and finger use. The main benefit is for patients with deficient or low vitamin levels. However, deep venous thromboembolism (DVT) is one rare but potential side effect of the treatment. Diet, however, is going to have the highest impact on weight loss. Worst mistake of my life was going vegan with CMT. Soda is one of the most popular foods around and, according to the experts at the Mayo Clinic, it's also one of the most harmful if consumed too often. Muscle cramps are rarely seen, but could be more common in patients prone to cramps, such as patients with CMT. One should avoid megadoses of B6 (10 times the RDA), which presents a danger only when taken in excess of the supplemental. Just "OWN" It - Build Your Own Fundraiser! Download it here: Dear-Medical-Professional.pdf. The first is tacrolimus (FK-506, ProGraf), which rarely causes a neuropathy with demyelinating features, probably by triggering an immune reaction. The risk for migraine Botox in CMT is minimal. Over the years, there have been a handful of single cases suggesting that Lipitor or other statins caused neuropathy, but no one thought the issue was very important. Alternatively, you may try for other green leafy veggies, like swiss chards, collards, and kale to include in your diet. This site is strictly a news and information website about the disease. Charcot-Marie-Tooth disease (CMT) is the most common inherited neuromuscular condition, affecting approximately 1 in in every 2,500 people. This could include replacing processed-flour goods with unprocessed grain products, such as bread, pasta, and rice. Not even thinking. >Lupron is not associated with worsening CMT or causing neuropathy, but what happens when sex hormones are altered in people who have disorders with muscle weakness, including CMT, is a very active area of current research. Choosing a variety of protein sources such as cold-water fish, poultry, grass-fed red meats and beans is important to get a variety of nutrients. Its possible that more local weakness than average will be produced in CMT patients, especially if the injections are in the legs. Progesterone is involved with nerve function and one progesterone blocker (onapristone) is a source of interest for a treatment trial because of its beneficial effects on a rat model of CMT1A, but the issue is far from settled. 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