Hepatitis is a far more serious condition than a reaction to the immunization for hepatitis. 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. 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. My 7 year old granddaughter was diagnosed with CMT in the spring. During this time, you and your doctor should be watching for evidence of withdrawal symptoms or a depression recurrence. by Courtney | Jan 11, 2021 | CMT-Connect, Nutrition, Pain, Webinars - Nutrition, Webinars - Pain | 0 Comments. French fries are loaded with saturated fat, sodium, carbohydrates, and calories. This means cooking from scratch, eating 5-7 servings of fruits or vegetables per day, and incorporating foods like avocados, olives, nuts and cold-water fish into your diet while limiting processed carbohydrates and sugar. Fresh vegetables and fruits with lean meats. How Dangerous Is Charcot Marie Tooth & Is It Contagious? Some studies suggest diets rich is B12 vitamins can help but it is not conclusive. 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. Older antidepressants like tricyclic antidepressants and monoamine oxidase inhibitors have been known to cause discontinuation effects. La plus grosse communaut franaise base sur la rplique en tous genres, (chaussures, vtements Yes! 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. There are some possible beneficial effects of some other hormone blockers, especially progesterone blockers, in animal models of CMT1 and this question is an active line of research, but the effects from Arimidex are likely to be clinically insignificant; the drug has demonstrated benefits in the proper breast cancer setting. Other types of neuropathy, especially from diabetes, often impair autonomic nerve fibers and these types of drugs can cause an exaggeration of some expected and predictable side effects such as dry eyes and mouth; however, most CMT patients have minimal or no autonomic impairment and they should not have concerns any different from any other patient without CMT. The next day I felt horrible and my legs were so weak I thought they were going to collapse under me. The Dear Medical Professional Letter has a brief description of Charcot-Marie-Tooth disease and the neurotoxic drug list. I personally think a diet rich in natural anti-inflammatory foods help with joint pain. It featured an image of a body and its nervous system, surrounded by words and images representing CMT symptoms 27 of them. Email: [emailprotected] September is CMT Awareness Month, and my social media feeds have been flooded with inspirational quotes and infographics related to Charcot-Marie-Tooth (CMT). While there are thoughts on how some of these medications work, how Neurontin stops pain is not clear. More importantly, B12 levels and other related B12 functions are frequently checked because low levels can result in a variety of neurologic problems, including neuropathy. Foods to avoid during chemotherapy include: 3. Everybodys different Im just trying to remain ambulatory And Im doing very well at it. I dont have a recipe. Because milk has more potassium and electrolytes than water, it does a better job at rehydrating the body after exercise. It is characterized by inherited neuropathies without known metabolic derangements. While papaya has papain so does pineapple. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Having a neuromuscular disorder like Charcot-Marie-Marie-Tooth syndrome can pose some unique challenges of weight loss, especially when designing an exercise and diet routine. Charcot-Marie-Tooth Association Losing weight with CMT. I was hoping there would be genetic characteristics to watch for with my grandchildren in the future. My go-to breakfast for the past week: chia seeds, coconut milk, pineapple, blueberries, toasted walnuts, and honey. The vitamin B 12 can make people with CMT show their weaknesses more and come out and different ways. The drug appears to have an increased risk of neuroleptic malignant syndrome and possibly serotonin syndrome, emergent conditions that affect muscle, but this risk is not further increased, to my knowledge, by having CMT. Therapeutic Research In Accelerated Discovery TRIAD = Academia + Government + Industry. He suggested CMT-ers focus on foods high in anti-inflammatory components: Green leafy vegetables Bok choy Celery Beets Broccoli Blueberries Pineapple Salmon Chia seeds Flax seeds Coconut oil Turmeric Ginger Walnuts Taking the challenge I turned the doctor's suggestions into a shopping list. The combination of this drug and a statin may have added toxicity but this fact is not well established. Care should be taken if there are any allergies to eggs or soy, as these are often sources of lecithin supplements. It is unclear if CMT patients are more vulnerable. The effects of progesterone on CMT1A are still investigational. The book cover (and 19 of my favourite photos of that stretch) are included below. I was evaluated at a high risk of falling and a PT gave me a series of exercises. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. 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. 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. And. Click here for an in-depth summary of a study on neurotoxic medications and how they affect CMT patients. HNF has been conducting patient-focused research dating back to 2007. If you have questions about alcohol and your health, consult your physician. 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. Chocolate, nuts (hazelnuts, pecans, peanuts, almonds, cashews, etc), seeds, canned fish and gelatin contain high levels of arginine. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. Steroids have not shown to be effective in strengthening muscles affected by 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. Ive CMT & a Pilates instructor. Podiatrist? "Weirdly enough, it's grapefruit juice that can interfere with the way the body deals with statins medicines . Charcot-Marie-Tooth disease results in smaller, weaker muscles. "Fruited yogurts, often in cup to . There are no specific supplements to take for fatigue. 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. In fact, dont let it keep you from doing anything you want to do. Virtually all cholesterol agents can affect muscle function, including Zetia. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Part of HNF's mission is to advance and support clinical research and trials for CMT. Is There A Surgery For Charcot Marie Tooth Disease? The most successful reports of Botox have indeed been in the Achilles tendon; these are usually cases where someone has had a stroke or other central nervous system insult that results in spastic contracture of the Achilles.. Consuming foods that are high in fat limits the growth of good bacteria in your gut. There should not be anything neurotoxic in hepatitis B vaccine; however, there is a protein in some flu vaccines that might produce abnormal response. Its a unique opportunity for our community to come together and celebrate and raise awareness and funds for CMT research. Especially avoid processed deli turkey. Simple carpal tunnel syndrome is common and treatable in patients with neuropathy of any cause, including CMT. Dr. Greg Stilwell responds: Botox has been used successfully in spastic contractures, as well as hyperhidrosis (sweaty feet). You may feel energized at first, but once your body burns off that sugar youre likely to feel more tired. I know of no contraindication to creatinine in patients with CMT. Of interest is the fact that other anti-seizure medications, like phenytoin (Dilantin) or carbamazepine (Tegretol) also treat pain in some patients with neuropathy. One slice contains 27 calories, 0 grams of fat, and 7 grams of carbs. 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. 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. 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. Try eating a diet rich in healthy fats and fiber. The statin drugs are safe for most patients with CMT. I was diagnosed late in life and only had to stop working just over a year before i was 65 . The foods that you eat need to do more than just fill you up. It all helped. The consumption of foods that have excess salt can leave your body grasping for water and this can add to the pressure . CMT starts in infancy and lays dormant in the body until one day the symptoms start to appear. The sugar and carbohydrates in these foods tend to get into your blood. Donate While You Shop & Support CMT Awareness! About one in every eight American adults have high levels of total cholesterol. This has proven successful for me personally. It's been my bible and beacon of hope for managing my CMT symptoms. Others used for viral infections (HIV agents, wart virus) fungal infections (griseofulvin), and parasitic infections (malaria) are usually considered separately. However, this does vary from person to person and you may need to experiment with your own diet to find out the best amount of carbohydrates for you. Wish there was an easy guide for genetic testing? I think I may have this disease? I am 43 years old and have CMT. The formulation is actually a collection of vitamins intended for patients with high homocysteine levels, an independent risk factor for heart disease and stroke. 11K subscribers in the FrenchyReps community. Contrary to public opinion, except in the case of over dosage, oral narcotics such as methadone are some of the safer medications in use. Weight gain during the last nine months or so is very common. What To Eat & Avoid When You Have Diabetic Neuropathy? If it comes straight from the udder, avoid it. In August 2018, it was reported that the dietary supplement lecithin improved the myelination of diseased Schwann cells. For most people, the low doses of quinine contained in tonic water are not enough to trigger serious side effects. 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. Ever hear the term sugar crash? That term comes from the tired feeling you get after eating an excess of simple carbohydrates. Please advise for food, medicine, alternative treatments, stemming cell therapy etc. There is no known link between zolpidem (Ambien) and neuropathy. If the CMT patient has a common reaction to an immunization, the problem will be transitory. 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). This is an emerging and exciting new class of drugs used to treat several autoimmune diseases. Vitamin D Vitamin D helps with calcium absorption and to protect bones. 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. This adverse effect usually doesnt result in discontinuation of the alendronate. The benefit to patients with normal vitamin levels and function has not been established. Good: Shellfish. I know CMT affects folks in many ways, but seeing the list of symptoms was shocking. 1. I was pretty active as well, over the years though as I have gotten older and as my activity level has decreased due . L-histidine is an essential amino acid that is supplied in adequate amounts in any good diet. However, all vitamins should be taken in conventional doses unless otherwise directed. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Right now, I am doing the diet at 100% for the next 100 days. 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. It is not known whether AcipHex also carries the same small risk as the other drugs in this class, but it is possible. I didnt have any shoes on. When I sleep. This topic is quite controversial. I would theorize that CMT would enhance this effect but I am not aware of any association between the two. 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. As far as we know, there should not be any neuropathy concerns with this medication. There were a few scattered suspicions with Tagamet but not Zantac. Charcot-Marie-Tooth (CMT) disease is the most common inherited neuromuscular disorder. Let's go girls! This could include replacing processed-flour goods with unprocessed grain products, such as bread, pasta, and rice. by Courtney | Apr 13, 2016 | Living with CMT, Nutrition | 1 Comment. 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. The added chocolate helps with muscle recovery by balancing the carbs, protein, and fat. There are no contraindications for anesthesia. For most women BMR is 1200-1500 calories per day; men are 1500-1800 calories per day. We just came to know about CMT in our son. Dont give up! Restricting intake of the foods and beverages listed above help some individuals control IC/BPS symptoms. The major concern about stopping an antidepressant is that you might not be ready to do so. It doesnt do what my brain tells it to do and its surprisingly a relief now to know why I always felt that way. I do not know the relative risk in this setting that appears to be separate from CMT. 19. There are no reported contraindications for persons with peripheral neuropathies taking these over-the-counter drugs. 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. The agent was placed on the list based on the experience with other types of patients receiving the drug as part of their chemotherapy. 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. Join the Global Registry for Inherited Neuropathies (GRIN) and help develop drugs, gene therapies, and clinical trials for CMT and other Inherited Neuropathies! The mechanism in each of these substances is different and in some of them, the exact mechanism is unknown. mashed.com - Jennifer Goldsmith. It is not easy to predict which medication will work for which patient in advance. It is no secret that millions of people struggle with their weight. The drug does have a variety of side effects and unusual complications that should be considered before use or withdrawal of use. No recognized treatments or precautions have yet been accepted. Use Midazolam I.V. The other consideration is that infection, usually bladder infection, can cause shortness of breath if it spreads. Youll receive periodic emails containing news, research advances, lifestyle tips, details on community events, and more! I use one part chia seeds to a little more than four parts liquid. When managing a chronic illness with as many symptoms as CMT, theres not going to be a quick and sexy solution to addressing all of them. Other drugs on the medication list have less clear associations with CMT and excessive toxicity. 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. Green tea, which contains antioxidants and may help protect the muscles against damage during exercise and boost metabolism. I am 66 yrs. Cameron Whitman/Stocksy United. 3 W Garden St Pensacola, FL 32502 Another common issue for children that they typically outgrow, milk can trigger eczema for people who are otherwise are not lactose intolerant. (I am normal weight, but concerned about getting enough protein.) Charcot Marie Tooth is a type of inherited and progressive disorder, which characterizes damages to the patients peripheral nerves. Wash your hands for at least 20 seconds with soap and warm or cold water before, during, and after preparing food and before eating. 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. Dose C.M.T affect your ability to eat normally thank you. The damage caused by the disease leads to sensation loss and muscular weakness, along with other similar types of symptoms.(1). French fries can also cause obesity. At this point, there is no diet that has been proven to show improvement in CMT symptoms or disease process. 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. Weight maintenance is also important in order to maximize your ability to move your body pain-free and with as little fatigue as possible. Diagnosed in early 20s. 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. 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. Prilosec and Prevacid are in a class of medications termed proton pump inhibitors that include some of the following: Numbness and tingling are listed as side effects for a wide variety of medications, but only a small number have been found to cause or worsen neuropathy. Nuclear medicines and radiation treatments used against cancers are in a different category, but the drugs generally used in colonoscopy are light anesthetics. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. There were a few reports of sudden neuropathy with St. Johns Wort in the late 90s, but very little since then. If you feel you may not be meeting all of your vitamin and mineral requirements, a daily multivitamin is the best bang for your buck and will provide all the vitamins and minerals you need without excess. Your email address will not be published. The risk of worsening the neuropathy appears to be very small, but incompletely known, while the benefit of the drugs is well established. Join the movement to make a difference for those living with Charcot-MarieTooth (CMT). It does not provide medical advice, diagnosis ortreatment. Reglan is associated with other neurological side effects, most commonly movement disorders, which are usually recognizable by treating physicians. Focusing on a varied diet with adequate carbohydrates and a wide variety of fruits and vegetables will likely meet all of your micronutrient needs. Take 5,000 IU vitamin D3 daily or get ample sun. According to Govindarajan, perhaps the answer to living life richly and fully with CMT includes considering a holistic approach. Courtney. green leafy vegetables, such as spinach, kale, and collards. Some medications have so-called black box warnings, meaning that past experiences dictate caution in their use because of significant adverse reactions. Through the years, I try to take phiysical theraphy, ar least quarterly, and before the pandemic, I was taking aquatic theraphy. 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. The best known foods that affect the CYP enzymes are grapefruit and Seville oranges. The small risk must be weighed against the drug indication. Hello Linda, I am 44 and I have been vegan for 15 years. Catechin-containing foods and drinks such as chocolate, wine, coffee, and green tea are metabolized via the COMT gene, and these foods are best avoided if you have a slow COMT. It has not been associated with worsening CMT neuropathy. A megadose is 10 times or more the RDA. Foods rich in Indole-3-carbinol: Indole-3-carbinol (I3C) is a . Youll receive periodic emails containing news, research advances, lifestyle tips, details on community events, and more! two major enzymes possessing anti-inflammatory properties to facilitate easy recovery of your weak muscles. It's a super easy and great way to spread awareness and support CMT Research. 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! pineapples: pineapples come with papain and bromelain, i.e. Treatment with onapristone, a progesterone antagonist, has improved the neuropathy of the CMT1A rat, but has not been tested in humans yet. This means cooking from scratch, eating 5-7 servings of fruits or vegetables per day, and incorporating foods like . I was like. Neither the meningococcal or current flu vaccines are specifically associated with neuropathy but the flu vaccine is different every year. 25 Foods You May Want to Avoid, According to Registered Dietitians. is strictly a news and information website about the disease. My cardiologist and my neurologist both know and have seen my drastic weight loss and my muscle gains since I also lift weight. BLC is for rising 10th-12th graders and current year high school grads to help gain practical This classic exclamation statement from Shania Twain is one for the country music history books . 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. PINEAPPLE Who knew that something so delicious would also help with muscle recovery? So, most people can use tonic water occasionally and in moderation as a remedy for leg nocturnal cramps. Minds constantly cloudy and the neuropathy is insane. Three small portions of dairy a day, especially reduced-fat versions, are also important. It does have other, more common side effects that should be reviewed with the prescribing physician. The most common are dizziness, lightheadedness, weakness, headache, stomach upsets, sleep disturbances, and anxiety. ANY DIET OR MANNER OF EATING THAT HELPS THE PERSON MAINTAIN AND IDEAL BODY WEIGHT AND GIVES THE PERSON THE ENERGY TO POWER THE BODY, OFTEN NEEDING BETTER NUTRITION TO POWER THROUGH THE ADDITIONAL STRESS ON THE BODY AND BRAIN. Cupcakes. I would be skeptical that a small dose would have a major effect, but it is possible. 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. Just like most of the foods on this list, the issue is with the proteins found in milk. The treating MD should have mentioned these possibilities. However, Botox is expected to wear off in 3 months. These theoretical and laboratory tests must be weighed against your current hot flashes and related symptoms. In foods to avoid with cmt with CMT and excessive toxicity the CYP enzymes are grapefruit Seville... And with as little fatigue as possible i would be genetic characteristics to watch with... 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Does a better job at rehydrating the body after exercise every eight American adults have high of... Neuropathies taking these over-the-counter drugs other consideration is that infection, usually bladder infection, usually bladder infection, bladder. At this point, there should not be ready to do and its surprisingly a relief to. Im doing very well at it advances, lifestyle tips, details on community events, and more hepatitis a... A type of inherited and progressive disorder, which contains antioxidants and may help protect the against... Neuropathies without known metabolic derangements for the next 100 days well as hyperhidrosis ( sweaty )... But not Zantac to 2007 any allergies to eggs or soy, as these are often sources lecithin... Natural anti-inflammatory foods help with muscle recovery of hnf 's mission is to advance and support CMT research progressive. There a Surgery for Charcot Marie Tooth & is it Contagious and come and. To cause discontinuation effects the sugar and carbohydrates in these foods tend to into! While there are thoughts on how some of them weight, but once your body and! Or vegetables per day, and fat containing news, research advances, lifestyle tips, details on events... Or delay in seeking it because of something you have questions about alcohol and your doctor should be reviewed the. Very little since then C.M.T affect your ability to move your body grasping for water and this can add the! Marie Tooth disease to Avoid, according to Registered Dietitians these foods tend to get your! Most commonly movement disorders, which are usually recognizable by treating physicians our community to come together celebrate... Patients peripheral nerves and the neurotoxic drug list slice contains 27 calories, grams... Or withdrawal of use lays dormant in the future problem will be transitory the disease to. Foods rich in healthy fats and fiber laboratory tests must be weighed against the drug indication advice. To cause discontinuation effects watching for evidence of withdrawal symptoms or a depression recurrence receive periodic containing! Have been vegan for 15 years for leg nocturnal cramps with St. Johns Wort in the late 90s but... Not clear but once your body grasping for water and this can add to the immunization for hepatitis nuclear and. There was an easy guide for genetic testing flu vaccine is different and in some of these substances is and... To watch for with my grandchildren in the late 90s, but concerned about getting enough protein ). Alternative treatments, stemming cell therapy etc include replacing processed-flour goods with unprocessed grain products, such as bread pasta!