Do you know if this is normal with 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. There is no clear indication that Peginterferon alfa-2a (Pegasys) can independently cause peripheral neuropathy or worsen CMT-related weakness. Ours also has a ramp down into the shallow end for people that cant use regular ladders. This could include replacing processed-flour goods with unprocessed grain products, such as bread, pasta, and rice. None of these drugs, such as midazolam (Versed), are on the list of agents with increased risk. Neurologist? I dont have a recipe. Foods such as halibut, nuts, nut butters, spinach, potatoes with skin, black-eyed peas, and spinach are rich in magnesium. French fries are loaded with saturated fat, sodium, carbohydrates, and calories. I am 67 and was just diagnosed this last week. Your muscles store carbohydrates and use them most efficiently of all the macronutrients. Is there anything to be done to lessen the neuropathy in my feet and legs, or how to change my diet to help. Three small portions of dairy a day, especially reduced-fat versions, are also important. Avoiding these foods will help to take the load off a slow COMT gene. 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. There is very limited information about nutritional and dietary supplements and peripheral neuropathy. info@cmtausa.org The drug is still frequently used to treat the symptoms of neuropathy as long as the common side effects are tolerable; there are other similar drugs available with fewer side effects. Avoid all processed foods. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. Any suggestions?? My go-to dressing is a base of two parts lemon juice to one part honey mustard, blended with olive oil and any herbs or spices I have on hand. In fact, dont let it keep you from doing anything you want to do. My go-to breakfast for the past week: chia seeds, coconut milk, pineapple, blueberries, toasted walnuts, and honey. Some CMT patients have an autoimmune polyneuropathy in addition to their CMT. The drug interferes with blood concentrations of many other drugs and this fact needs to be taken into consideration when dosing, but there are no suspicions that it causes neuropathy or worsens CMT. It reminded me of one of my takeaways from the CMTA Patient/Family Conference I attended earlier this month. Taking the drug at its usual dose for the typical seven to 10 days rarely causes a problem. The benefit is not intended to treat cholesterol per se. French fries and potato chips. 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. I havent seen my neurologist yet to receive instructions. Im trying to do a lot of exercises in the water. The added chocolate helps with muscle recovery by balancing the carbs, protein, and fat. However, deep venous thromboembolism (DVT) is one rare but potential side effect of the treatment. What exercising can I do I,am weak using cane. There is no listed contraindication to the use of alendronate (Fosamax) in patients with CMT. There is no evidence that CMT patients would fare differently from others and PHN can be particularly painful for these individuals. I have Cmt. It doesnt do what my brain tells it to do and its surprisingly a relief now to know why I always felt that way. Neither do I believe that there is any theoretical reason why this should make a neuropathy worse. What is Charcot Marie Tooth (CMT)? How Common Is Charcot Marie Tooth Or Is It A Rare Disease? I am trying to find info to learn more about CMT any advice? Avoid foods that contain chilies, cayenne pepper, pepperoni pizza, and fast foods. When an immune attack on nerves is triggered in a CMT patient, any nerve damage may add to the underlying neuropathy. It covers the first half of my journey, a 32,600km cycle from Ireland to Australia. Keep up the good work i will definitely read more posts. Green Tea: Studies have proved that people consuming 2 to 3 cups of green tea had relatively fewer marks of the cell damage caused by resistance to physical exercise. Dr. Greg Stilwell responds: Botox has been used successfully in spastic contractures, as well as hyperhidrosis (sweaty feet). Nitrofurantoin (Macrodantin) is an antibiotic used for a variety of problems, but more extensively in past decades for UTIs. I was diagnosed with CMT last September. Foot deformities such as hammertoes and high arches also are common. Also, green tea is loaded with antioxidants called catechins, which help speed up your metabolism. The most important thing is to just keep going, stay consistent and try not to let the slow progress derail you. Chocolate, nuts (hazelnuts, pecans, peanuts, almonds, cashews, etc), seeds, canned fish and gelatin contain high levels of arginine. As far as we know, collagen peptides should not pose a problem. The hammertoes seen in CMT are usually as a result of muscle imbalance and structural misalignment. With blueberries, pineapple, walnuts, and chia seeds on my shopping list, making chia pudding was an obvious choice. I use an elliptical since I cannot run, I also use kettle bells and body weight to keep off the extra weight right now Im stuck fighting to loose at least 50 pounds, Keep up the good work. 7. A deformed foot can cause pressure sores to develop in the foot or ankle. At this point, there is no diet that has been proven to show improvement in CMT symptoms or disease process. 2. 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 This is a complex situation. Fatty fish, such as tuna and salmon, are good sources of omega-3 fatty acids and generally thought of as healthy. I suffer daily with chronic pain. 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. Charcot-Marie-Tooth, or CMT, is the most commonly inherited peripheral neuropathy and is found worldwide among all races and ethnic groups. Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. Only. The association seems to hold true only for CMT1A, the most common form, and HNPP (Hereditary Neuropathy with liability to Pressure Palsies); both are associated with defects in the PMP22 gene. Consuming a healthy and balanced diet alongside a tailored exercise plancan play an important part in managing weight. Is There A Surgery For Charcot Marie Tooth Disease? This article may contains scientific references. Take multivitamin, alpha-lipoic acid and co-enzyme Q10 daily. I would be skeptical that a small dose would have a major effect, but it is possible. HNF Board of Directors, Staff and the TRIAD Council. https://charcot-marie-toothnews.com/charcot-marie-tooth-and-diet/, https://www.hnf-cure.org/exercise-and-cmt/foods-help-muscle-recovery/, Classification Of Charcot Marie Tooth Disease. 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. Aiming for foods with less than 5g sugar per serving and 5g fiber or more per serving is best. As with any treatment with possible toxicity, the relative risks and benefits need to be weighed. I have been vegan almost 3 years. The process, in general, lasts for one to four weeks and then improves depending on the severity of the process. Alcohol was removed from the neurotoxic drug list in July 2004. Cant say enough about how much it has helped me. We need YOU! Charcot-Marie-Tooth Association To help you towards your goal of a healthier you, however, we have put together a list of some foods that will help boost muscle recovery as well as burn fat, helping you to look and feel better than ever! About one in every eight American adults have high levels of total cholesterol. Take 5,000 IU vitamin D3 daily or get ample sun. Decisions about steroid use or dose should be weighed against the expected benefit gained for the arthritis and the severity and type of the arthritis. The sugar and carbohydrates in these foods tend to get into your blood. Hepatitis-C infection is a much more common cause of neuropathy and one important reason to suppress the virus. Doses in excess of 50 mg/day are unlikely of added benefit to CMT patients. I think what helps me that this cmt2 is so slow advancing in my case. Website: bionews.com clearing any trip hazards from your home and taking particular care on uneven ground can all help you avoid falls. It does not provide medical advice, diagnosis, or treatment. Helpful patient care resources for the treatment & management of CMT. Podiatrist? Spinach: The latest study has revealed that spinach plays a major role to increase protein synthesis and hence, it helps in faster repairing of body muscles after you complete your regular workout. This fact should be brought to the attention of your treating physician so a decision on the best course of action can be made. Temps were in the mid/90s. Most Metronidazole (Flagyl) treatments are 2 weeks or less and constitute very limited risk. The changes described are not surprising following the loss of the hormone treatment, but testosterone has not been adequately examined for safety and efficacy in CMT patients to recommend use for neuropathy. I believe there are HRT formulations with lower progesterone content, but someone expert in that area would need to advise you on which formulation is most appropriate and the lowest risk for non-neurologic complications, such as endometrial hyperplasia. 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. I am 43 years old and have CMT. There were a few reports of sudden neuropathy with St. Johns Wort in the late 90s, but very little since then. Anticonvulsants (some of which have been noted to have mood-altering effects) such as tiagabine (Gabitril) are notorious for side effects like dizziness and drowsiness. Vinblastine also causes neuropathy in individuals without existing neuropathy. Save my name, email, and website in this browser for the next time I comment. In addition to complex carbohydrates, micronutrients play an important role in providing your body with usable energy from food. Care should be taken if there are any allergies to eggs or soy, as these are often sources of lecithin supplements. I enjoy the deep water exercises because my feet dont touch the bottom and I love being suspended in the water. Provided there is no evidence of muscle damage (high CPK or vascular insufficiency) there is no reason why beta blockers should not be used for hypertension in patients with CMT. Her symptoms dissipated in four months. No recognized treatments or precautions have yet been accepted. 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. Foods to Avoid on Chemo. 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 effects of progesterone on CMT1A are still investigational. Cow's Milk. Does anyone have great recipes that use turmeric? 3 W Garden St Many people take the blood thinner warfarin (Coumadin) for a variety of reasons. Other than B6, the B vitamins have no known risk. Common and infrequent reactions include nausea, odd numbness, chest tightness, dizziness, drowsiness, and fatigue. Because a person with CMT cant exercise as hard as someone without CMT, it is important to watch your diet. I do not know the relative risk in this setting that appears to be separate from CMT. The drug does have a variety of side effects and unusual complications that should be considered before use or withdrawal of use. Eating breakfast not long after getting up can also be important, as this kick-starts the metabolism and can help burn calories faster. Create a Facebook Fundraiser to help raise funds for CMT research.Make sure to choose, Hereditary Neuropathy Foundation as your non-profit. Oysters. (Photo by Young Lee). No gluten, no sugar or high fructose corn syrup. has been associated with respiratory depression and respiratory arrest. Other drugs on the medication list have less clear associations with CMT and excessive toxicity. 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). The degree of interference with your normal life and duties are important considerations. Green tea, which contains antioxidants and may help protect the muscles against damage during exercise and boost metabolism. We rely on your donations as we advance our mission to deliver results to our CMT family community. The potential benefit may simply be adding more muscle and not improved nerve function. Where possible, salt, fat, and sugary food and drinks should be minimized. If these substances damage normal nerves, patients who already have a nerve disease, either hereditary as in CMT or acquired in diabetes, are more susceptible to these substances. I also tried making turmeric tonic. Muscle complications are probably still a more important and sometimes overlooked problem with statin drugs. Pineapples: Pineapples come with papain and bromelain, i.e. Here are 11 foods to limit when you're trying to lose weight. Taking too much B6 is bad. I can barely walk anymore. These have not been tested in clinical trials for CMT patients, butinclude: Charcot-Marie-Tooth Newsis strictly a news and information website about the disease. sugar should be consumed in moderation. Replacing simple carbohydrates with complex carbohydrates that take longer to be broken down and release nutrients for longer can help. From unhealthy fats to artificial sweeteners, these picks don't pack much nutrition. I eat a lot of microwave frozen. I often have this problem. Its rare that one of these posts gives me information I hadnt heard before, but one infographic caught me off guard. How was the diagnosis process? You may feel energized at first, but once your body burns off that sugar youre likely to feel more tired. 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 . Taxols also pose a high risk to people 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. 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. You should say no to any of the ready meals or fried foods, as these are usually oily foods and hence, trigger weight gain. Your doctor or pharmacist will tell you if you . by Unfortunately, none of these medications work all the time for all patients; some work for some patients, others work for other patients. There is no known link between this drug and neuropathy or a specific link to CMT, though any cause of muscle weakness can hamper function in CMT patients who have weakness as part of their condition. 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. nuts like almonds and walnuts. The program offers adaptive free online classes for everyone! We know very little about special risks for patients with less common forms of the disease. 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. Pineapples are packed with bromelain and papain, two enzymes that have anti-inflammatory properties, which is great for recovering muscles. Although Lee first learned he had CMT at a very young age, he didnt participate much in the CMT community until 2018, when his friend and fellow BioNews writer, Kevin Schaefer, encouraged him to explore and learn more about this very important aspect of his life. Tremor is one of the more common side effects of lithium. Email: [emailprotected] One of the challenges facing people with CMT is fact that CMT muscles can take longer to recover from exercise. 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. As with the other medications utilized for this neuropathic pain, including amitryptiline, nortryptiline and carbamazepine, Neurontin is not specific for CMT pain, but is used in many painful neuropathies. However, if you are Vitamin D deficient, discuss supplementation with your doctor. There were a few scattered suspicions with Tagamet but not Zantac. The damage caused by the disease leads to sensation loss and muscular weakness, along with other similar types of symptoms.(1). 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