The agent was placed on the list based on the experience with other types of patients receiving the drug as part of their chemotherapy. Shania's new album "Queen of Me" is out now! Helpful patient care resources for the treatment & management of CMT. Weight gain during the last nine months or so is very common. There are no reported contraindications for persons with peripheral neuropathies taking these over-the-counter drugs. We recommend a heart-healthy version of scrambled eggs 1 whole egg and 1 egg white, scrambled together with oz of lowfat cheese. The top food sources of B vitamins are leafy greens, salmon, eggs (with yolk), shellfish, poultry, beef, fortified whole grains and sunflower seeds. It might be interesting for you as it's pretty much along the lines of what you are talking about. However, everyone has unique diet needs related to energy levels, weight maintenance, etc. Soda. No gluten, no sugar or high fructose corn syrup. 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. Most CMT patients will not have a reaction other than the kind that might be expected in anyone. Required fields are marked *. There is no known or reported link between worsening neuropathy and either Lomotril or metoclopramide (Reglan). HNF advances preclinical research as quickly as possible if it aligns with our key objectives. I was like. Red meats, including beef, lamb pork and bacon. Phone: 1-800-936-1363. The small risk must be weighed against the drug indication. 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. That is absolutely the best starting point. While it is not known if that finding can be applied to CMT muscles, it is hopeful news. 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. There is no listed contraindication to the use of alendronate (Fosamax) in patients with CMT. The drug, however, is associated with other direct lung (pulmonary) toxicity of differing types and is more than likely the cause of your problem. 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. How To Diagnose Charcot Marie Tooth & What Is The Best Medicine For It? 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. Exercise is so important. I suffer daily with chronic pain. Your email address will not be published. 2. Ours also has a ramp down into the shallow end for people that cant use regular ladders. There are no contraindications for anesthesia. The drug can cause sleepiness or sedation, which is its primary useful effect and can make some motor tasks more difficult for CMT patients. I weighed 230lbs and I am now down to 166lbs. I am over fifty, and feel very down at times. Pineapples are packed with bromelain and papain, two enzymes that have anti-inflammatory properties, which is great for recovering muscles. We are grateful for your generosity in supporting our mission! Both may have a variety of side effects, which are complicated by the fact that most who take the pill already suffer from an acute migraine. I use one part chia seeds to a little more than four parts liquid. 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). Pineapples: Pineapples come with papain and bromelain, i.e. Get plenty of sleep! It is no secret that millions of people struggle with their weight. 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. 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. It has many uses including blood pressure control, heart disease, migraine prevention, and suppressing essential tremors. Charcot Marie Tooth is a type of inherited and progressive disorder, which characterizes damages to the patients peripheral nerves. None of these drugs, such as midazolam (Versed), are on the list of agents with increased risk. 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). Because my feet were cramping in and out. His 2020 illness is no secret that millions of people are fighting their weight. French fries can also cause obesity. Some research suggests that fish high in omega-3 fatty acids (but not omega-3 supplements) are linked to a lower risk of gout flare-ups. While there is no evidence that vaccines affect the CMT genes directly, the issue has not been studied. It may be downloaded here: Full_Medical_Alert_List.pdf, A printable card may be downloaded here: Medical_Alert_Card.pdf. We are not doctors, so we urge you to consult a doctor before beginning an exercise plan. It covers the first half of my journey, a 32,600km cycle from Ireland to Australia. Avoiding alcohol, Fluoride, coffee and eating organic has helped me. 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. 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. Sugar: Sugar is a complete source of empty calories as it have 100% of energy and no other nutrient. Pineapples do not contain Papain, thats from Papayas. Thank you to the many faces and families who have chosen to share their stories and fundraise for their rare subtype of CMT. There are a few others with minor or preventable risk, such as Isoniazid (INH). Similar to eggs, it might depend on how the milk is used that causes the flare-up. The CMTA at this point does not recommend lecithin supplementation, but there are reputable web sites that give approximate doses for treatment of other conditions, like high cholesterol. There is no known direct effect of Evista on CMT patients or peripheral neuropathy. I was diagnosed late in life and only had to stop working just over a year before i was 65 . Of course, if they dont actually need the statin, they should think carefully before using one. In fact, a single slice of pineapple contains 27calories with only 7grams of carbs. First of all, youre not alone! Because a person with CMT cant exercise as hard as someone without CMT, it is important to watch your diet. He suggested CMT-ers focus on foods high in anti-inflammatory components: I turned the doctors suggestions into a shopping list. Consider joining your local YMCA and take their water aerobics classes. 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. Alternatively, you may try for other green leafy veggies, like swiss chards, collards, and kale to include in your diet. The risk of worsening the neuropathy appears to be very small, but incompletely known, while the benefit of the drugs is well established. This leaner meat is nonetheless high in purines. Im 63 years old. Food provides energy for all cells in the body, and the types and amounts of certain foods can influence the way your body uses that energy. 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. Tim, Im looking for solution. Rash, however, is a potential complication of any medication. Most associations have not been proved after larger scrutiny. Discovered in 1886 by three physicians, Jean-Martin Charcot, Pierre Marie, and Howard Henry Tooth, CMT affects an estimated 2.6 million people. 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: With this approval, the FDA granted a . Is There A Surgery For Charcot Marie Tooth Disease? I noticed a decline in the last few years, but I attributed everything to the aging process. When I started reading your post I thought it could have been mine. A good occupational therapist may recommend some tools to facilitate hand and finger use. When I sleep. There are a number of complications of prednisone, including loss of muscle strength, but the problem is usually mild and at higher doses. There is no information about a positive or negative reaction from a patient with CMT with any of these treatments. They are low impact and even if you dont swim, you can safely exercise because floatation belts are provided. Problems have also been described with some even newer antidepressants, such as Effexor. Botulinum toxin (Botox) is complicated for CMT patients. Definite gastritis or duodenitis is a much stronger reason for use and for potential benefit than simple, uncomplicated heartburn. 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. Suite 700 It's a super easy and great way to spread awareness and support CMT Research. (Trip stats/details in comments) 1 / 20. Therapeutic Research In Accelerated Discovery TRIAD = Academia + Government + Industry. , and my social media feeds have been flooded with inspirational quotes and infographics related to Charcot-Marie-Tooth (CMT). The CMTA is a 501(C)(3) nonprofit organization, EIN# 22-2480896. Novocaine allergy is extraordinarily rare. I can barely walk anymore. Limit buying foods that are high in sodium, fat, sugar, or starch content. Only a few antibiotics are known to be of higher risk to CMT patients than others, so I would need to know the specific antibiotic to answer fully. Charcot-Marie-Tooth, or CMT, is the most commonly inherited peripheral neuropathy and is found worldwide among all races and ethnic groups. It will be helpful to anyone who employess it, as well as me. This class of medication is not known to affect CMT or cause neuropathy and is not contraindicated in CMT in general. I also tried making turmeric tonic. The painful reaction experienced is a very unusual reaction to amitriptyline (Elavil). smaller meals with regular healthy snacks in between, https://www.youtube.com/watch?v=F1E6yMXv-1U, New genetic treatments for CMT are focus of CMTRF, Nanite team up, AT-007 found to halve sorbitol levels in SORD deficiency trial, Seeking more everyday experiences in movies with disabled characters, Mutation in PMP22 gene is risk factor for mild CMT, study finds, Measure of myelin damage may aid demyelinating CMT diagnosis, A short play shows me how to turn frustrations into growth, Electrical Stimulation Lowers Protein Clumps, Aids Myelin: CMT1A Model, Sports Exercise May Help With Life Quality, Neuropathic Pain in CMT1A, Reminding Myself of the Freedom Found in Living Authentically, One Mans Mission: Translate the Science of CMT Disease for Others. September is CMT Awareness Month, and my social media feeds have been flooded with inspirational quotes and infographics related to Charcot-Marie-Tooth (CMT). There does not appear to be a specific diet that helps or hinders those with CMT. info@cmtausa.org 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. When you have CMT it is important to make sure youre eating enough carbohydrates for your muscles to have a steady fuel source, but too many simple carbohydrates can make you feel more tired. is strictly a news and information website about the disease. Start a CMT Birthday Fundraiser! 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. Also had extensive neck and back surgery as well as knee replacement. However, at the present time there is no effective treatment to stop or slow down the progression of the disease and we do not yet know how to regulate or replace the myelin proteins. Ethnic groups most associations have not been studied key objectives as hard as without! With some even newer antidepressants, such as Effexor used that causes the flare-up hard as someone without,... No listed contraindication to the many faces and families who have chosen to share their stories and fundraise for rare! And great way to spread awareness and support CMT Research the lines of what you are about... Take their water aerobics classes thank you to consult a doctor before beginning an exercise plan eggs 1 whole and... What is the Best Medicine for it applied to CMT muscles, it might be in... ) ( 3 ) nonprofit organization, EIN # 22-2480896 papain and bromelain, i.e recommend a heart-healthy version scrambled... Surgery for Charcot Marie Tooth & what is the most commonly inherited neuropathy. 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