Weight gain during the last nine months or so is very common. It is tough trying to be vegan and then being told that you need milk and eggs to get/ strong. Avoid all processed foods. Its rare that one of these posts gives me information I hadnt heard before, but, It featured an image of a body and its nervous system, surrounded by words and images representing CMT symptoms 27 of them. Having a neuromuscular disease like Charcot-Marie-Tooth syndrome can pose some unique challenges to weight loss, especially when designing an exercise and diet routine. Had symptoms all of my life. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. This class of medication is not known to affect CMT or cause neuropathy and is not contraindicated in CMT in general. 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: , and my social media feeds have been flooded with inspirational quotes and infographics related to Charcot-Marie-Tooth (CMT). mashed.com - Jennifer Goldsmith. One problem is that the full ingredient list in some herbal supplements is not available, accurate or required. What are the best foods to eat when you have gout? If it took you nine months (March to December) to gain the weight, you can count on it taking at least nine months to lose again. For most people it has been a combination of stress, uncertainty, depression, lack of routine, inability to fit in traditional physical activity and lots of free time to eat. The chance of it working depends in part on the type of tremor and whether it is part of the CMT1X or a separate problem. info@cmtausa.org Patients with these other, similar treatments (three in total at this point) have developed otherwise typical chronic inflammatory demyelinating neuropathy (CIDP), an acquired disease that affects many of the same nerve fiber types as CMT. I dont think children or mothers should avoid routine vaccines especially since whooping cough (diphtheria) is trying to make a comeback because of unvaccinated children. But foods that are high in B 12 should be avoided mostly. I am trying to find info to learn more about CMT any advice? I made a broccoli curry with turmeric, but I wasnt happy with it. Some common sources of high levels of vitamin K include many leafy vegetables, such as spinach, kale, cabbage, asparagus, broccoli, Brussels sprouts, green onions, endive, lettuce, turnip, collard greens and mustard greens. There are concerns for prolonged general anesthesia in the ICU setting for many days to weeks, but there is no evidence of a problem with short-term anesthesia. Built to get you more shares and more followers. (Photo by Young Lee). Description of the most prevalent types of CMT. Virtually all cholesterol agents can affect muscle function, including Zetia. The genetic defects in most demyelinating types of CMT are known, as are the encoded proteins and their functions. When an immune attack on nerves is triggered in a CMT patient, any nerve damage may add to the underlying neuropathy. The vitamins included are folate, vitamin B6 and vitamin B12, which qualifies the pill as a food supplement and not a drug. Along with disc problems and Arthritis in lower back. HNF is a 501(c) 3 public charity enabling donors to support our mission safely. Proposed list of medications of concern to patients with CMT Definite high risk (including asymptomatic CMT) Vinca alkaloids (vincristine) Moderate to significant risk Amiodarone Bortezomib (velcade) Cisplatin, carboplatin, oxaliplatin Colchicine (extended use) Dapsone Didanosine (ddI) Dichloroacetate Disulfiram Gold salts Leflunomide HNF has a national network designating medical Centers of Excellence (COE) for the hereditary neuropathy patient community. Get To Know What Possibly Could Be Causing Your Symptoms! Take 5,000 IU vitamin D3 daily or get ample sun. The formulation is actually a collection of vitamins intended for patients with high homocysteine levels, an independent risk factor for heart disease and stroke. It does not provide medical advice, . Whooping cough vaccine is part of the dPT or dP routine vaccination. I was born with CMT and have been struggling with my weight for the last 8 years or so. Alcohol was removed from the neurotoxic drug list in July 2004. Your email address will not be published. For most women BMR is 1200-1500 calories per day; men are 1500-1800 calories per day. Certainly, the underlying problems of CMT, Charcot joint, arthritis and spine disease must also be considered by your physician. Right now, I am doing the diet at 100% for the next 100 days. This includes their juice and other products that are mostly made from these, for example marmalade. I'm praying it works to soften the nerve pain in my feet and hands and hopefully also to lessen to fine motor coordination that I am losing in my hands. X-linked type CMT 2 is an unusual form; CNS demyelination is also seen, but is unusual as well. Other drugs on the medication list have less clear associations with CMT and excessive toxicity. Given the widespread usage and rarity of report, the link is tenuous at best. Glenolden, PA 19036. They helped me. There are a few others with minor or preventable risk, such as Isoniazid (INH). Working on your diet and exercise on a daily basis will yield results over time, but it will likely take longer than you hoped. What exercising can I do I,am weak using cane. Tea. Hi, A recent in-depth literature review found no cases going back to 1963 that described any effects, positive or negative, of Adriamycin in a CMT patient. Throwing back sugary drinks like soda can result in significant weight gain, wrinkly skin, an increase in triglycerides and more. The best possible diet you can be on to manage your CMT symptoms is one that is nutritionally balanced in a way that your muscles receive all the necessary macro and micro-nutrients to optimize their function. PINEAPPLE Who knew that something so delicious would also help with muscle recovery? Fresh vegetables and fruits with lean meats. 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. I had a Bilateral Achilles Tendon Release Op at the age of 2yrs +. 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. Yeast and yeast extract. Participate in an HNF-hosted event or create your own. Download it here: Dear-Medical-Professional.pdf. While papaya has papain so does pineapple. Contrary to public opinion, except in the case of over dosage, oral narcotics such as methadone are some of the safer medications in use. Eatingsmaller meals with regular healthy snacks in between, rather than large meals, can alsohelp reduce fatigue. Vincristine in particular is an exceptionally high risk for CMT1A patients and can result in severe, irreversible neuropathy after one or two standard doses. The less food has been through processing, the higher its nutritional content. Its a unique opportunity for our community to come together and celebrate and raise awareness and funds for CMT research. Overdosing of Midazolam may be a concern in CMT patients and it sounds to me that since you have undergone this procedure before without the use of Midazolam, it would be safer to do the same thing again. Hi im 34 and have cmt type 1A, iv read alot of bad things how people end up life wise that have cmt but there must be people out there that life a long an able life, i would love to hear from people, regards Grant. Some experts recommend tapering the dose down over a period of one week for every month youve been on the drugsix to eight weeks if youve been on the drug for six to eight months, as a rule of thumb. So when you finish your walk around the block, trade out the iceberg lettuce in your evening salad for some spinach and give your muscles a helping hand. Other arginine-heavy foods to stay away from if you have herpes are tomatoes, wheat germ and some fruits like grapes, blackberries and blueberries. Can this diseases cause a metallic taste in mouth? Here's what to know if you're trying to adjust your diet so you can better manage diabetes. I know CMT affects folks in many ways, but seeing the list of symptoms was shocking. Your son needs the advice of an internist to keep his diabetes under control. There are no reports of neuropathy and Avastin in association with macular degeneration applications. What can I do to alliviate the pain. First of all, youre not alone! You may feel energized at first, but once your body burns off that sugar youre likely to feel more tired. None of the other medications listed are associated with weakness or neuropathy, but your case sounds more complex than many because of the antiphospholipid syndrome. 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. Most antibiotics in common use are not associated with neuropathy, even with prolonged use. Neurologist? Do you know if this is normal with CMT? Charcot-Marie-Tooth, or CMT, is the most commonly inherited peripheral neuropathy and is found worldwide among all races and ethnic groups. Ours also has a ramp down into the shallow end for people that cant use regular ladders. Low impact, moderate exercise is very helpful. 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. I try to eat fewer calories and, for environmental and health reasons, Ive started to limit my consumption of red meat. There are 254 drug interactions with CMT (choline salicylate / magnesium salicylate) CMT (choline salicylate / magnesium salicylate) alcohol/food interactions. Limit buying foods that are high in sodium, fat, sugar, or starch content. You should avoid or reduce the consumption of any type of processed flour food items, like rice, pasta, and bread. Eliminate food with trans fats and other bad fat. September is CMT Awareness Month, and my social media feeds have been flooded with inspirational quotes and infographics related to Charcot-Marie-Tooth (CMT). Tim, Im looking for solution. No, but it is advisable to eat healthily and avoid excessive weight gain. Save my name, email, and website in this browser for the next time I comment. Nine days after vaccination is a reasonable time frame but we have no means to prove the association. My feet cramp. By Tasting Table. 18. Is There A Surgery For Charcot Marie Tooth Disease? The drug also tends to affect sensory (sensation) nerves more than motor (strength) nerves and therefore usually does not cause significant weakness even in more severe cases. This topic is quite controversial. Older antidepressants like tricyclic antidepressants and monoamine oxidase inhibitors have been known to cause discontinuation effects. As with any treatment with possible toxicity, the relative risks and benefits need to be weighed. AcipHex (rabeprazole) is in the same class of drug as Prilosec (omeprazole) and Prevacid (lansoprazole), both of which have very rarely been associated with causing peripheral neuropathy. In addition to complex carbohydrates, micronutrients play an important role in providing your body with usable energy from food. 2. Please make sure you JOIN the Global Registry for Inherited Neuropathies (GRIN). It was soo painful. Hi Copyright 2023 Hereditary Neuropathy Foundation | 1641 3rd Avenue #28K New York, NY 10128 | Powered by. Exercise can be difficult to sustain with CMT, as the muscles and joints are weakened and take longer to recover following exercise. Is that unwise for a wheelchair-bound person with CMT? Is there anything to be done to lessen the neuropathy in my feet and legs, or how to change my diet to help. Therefore, you should try to opt for low fat alternatives to foods that can be high in fat. 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. Drowsiness is also common. Information on diseasemaps.org is reported by users and is not medical advice. So, most people can use tonic water occasionally and in moderation as a remedy for leg nocturnal cramps. (Photo by Young Lee). 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. Dr. Greg Stilwell responds: Botox has been used successfully in spastic contractures, as well as hyperhidrosis (sweaty feet). A 30-year-old African woman sustained weakness in her legs and a burning sensation in her feet for two months following the application of hydroquinone (skin bleaching) cream, which she had been using for four years. There is no medical evidence to suggest that any vaccine, including the flu shot, would be inadvisable for a patient on account of his/her CMT. 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. Exercise helps create a larger calorie deficit and has more benefits including muscle health, cardiovascular health, mental health, etc., so it is important to exercise regularly on this path to weight loss. I did quite well with it when I was younger.I danced a lot and active with my 2 kids in my early and mid 20s. How Dangerous Is Charcot Marie Tooth & Is It Contagious? The two used for bacterial infections with the most convincing link to neuropathy are metronidazole (Flagyl) and nitrofurantoin (Macrodantin, Furadantin, Macrobid). 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 other consideration is that infection, usually bladder infection, can cause shortness of breath if it spreads. This article does not provide medical advice. | Ive CMT & a Pilates instructor. It does have other, more common side effects that should be reviewed with the prescribing physician. Definite gastritis or duodenitis is a much stronger reason for use and for potential benefit than simple, uncomplicated heartburn. Wash your utensils, cutting boards, and countertops with hot, soapy water after preparing each food item. The amount of B6 is small as long as multiple pills are not used daily. Eating significantly less than your BMR may actually stunt your weight loss efforts. Foods to Eat and Avoid When You Have an Ulcer Choose These Foods Fruits Vegetables Legumes Lean meats like skinless poultry and lean beef Fish and seafood Eggs Whole soy foods like tofu or tempeh Fermented dairy foods like kefir or yogurt Healthy fats like olive oil, avocados, and nuts Whole and cracked grains Green tea You will live a long life. People with CMT experience fatigue as a result of the extra effort required to . The first is tacrolimus (FK-506, ProGraf), which rarely causes a neuropathy with demyelinating features, probably by triggering an immune reaction. Neither the meningococcal or current flu vaccines are specifically associated with neuropathy but the flu vaccine is different every year. 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