If it does occur, CMT makes the diagnosis more difficult but treatment is the same. 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. Obesity and Charcot Marie Tooth symptoms may even increase your risk to suffer from diabetes, which causes further damages to your body parts, along with your lungs and heart. A deformed foot can cause pressure sores to develop in the foot or ankle. Vincristine in particular is an exceptionally high risk for CMT1A patients and can result in severe, irreversible neuropathy after one or two standard doses. Temps were in the mid/90s. It is hard to.chang. WE ARE THE DRIVING FORCE BEHIND CMT RESEARCH FOR A CURE. Once you and your doctor decide to stop the medication, the dose should be gradually reduced over a few weeks to avoid the chance of withdrawal symptoms. The program offers adaptive free online classes for everyone! In fact, a single slice of pineapple contains 27calories with only 7grams of carbs. I was diagnosed with CMT last September. Living and learning from the daily battles with both of them has really taught me a lot about how this disease affects and differs from each person. These include varieties of pulses/legumes, egg (egg white preferable), salmon fish and lean meats.(2). clearing any trip hazards from your home and taking particular care on uneven ground can all help you avoid falls. Antimuscarinic medications such as Vesicare are not known to cause or worsen neuropathy. The two mentioned are the only ones reported in the literature, but you are correct to observe that there is no reason why the others should not have a similar risk even though the association has not been noted. Coffee (caffeinated and decaffeinated), tea (caffeinated and decaffeinated), soda, alcohol, citrus juices, and cranberry juice. Alcohol was removed from the neurotoxic drug list in July 2004. Avoiding alcohol, Fluoride, coffee and eating organic has helped me. I am 5' 1" weighing 155 lbs. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Where possible, salt, fat, and sugary food and drinks should be minimized. In this way, green tea helps you losing bodyweight even you fail to do any exercise or involve in low-intensity exercise. YUBHA has taught over 100 students, and a lot of them have cleared different Access our archives since 2014. http://www.angelfire.com/mi2/chip/cmt.html. When an immune attack on nerves is triggered in a CMT patient, any nerve damage may add to the underlying neuropathy. Would like some help from others relating to my problem with C.M.T , food advice to diminish the pain. Cupcakes. 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. Where possible, salt, fat, and sugary food and drinks should be minimized. Not even thinking. The major concern about stopping an antidepressant is that you might not be ready to do so. Anti-inflammatory foods. 1715z-16 allowed HUD to insure ARMs that have fixed interest rates for 3 years or more and are not subject to interest rate caps if the interest rate remains fixed for more than 3 years. It doesnt do what my brain tells it to do and its surprisingly a relief now to know why I always felt that way. Additionally, taking megadoses of any substances is not advisable. Weight maintenance is also important in order to maximize your ability to move your body pain-free and with as little fatigue as possible. There is no evidence, however, of true worsening of weakness or sensory function. How many calories, and how much protein do you recommend? :-), Sorry but a high plant diet will make your CMT symptoms worse. But fruited yogurt is another story. Raw seafood: Oysters, most types of sushi, and other kinds of raw or undercooked seafood should be off the menu for now. If they appear to worsen after starting a statin, the issue should be addressed with their physician. Vitamin D Vitamin D helps with calcium absorption and to protect bones. Wish there was an easy guide for genetic testing? info@cmtausa.org In most cases, foods that are high in calories will give a calorie count of about 225 calories per 100 grams on the label. 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. Micronutrients are vitamins, minerals, and antioxidants. Diabetes mellitus produces different types of peripheral neuropathies. I try to eat fewer calories and, for environmental and health reasons, Ive started to limit my consumption of red meat. Alternatively, you may try for other green leafy veggies, like swiss chards, collards, and kale to include in your diet. Others used for viral infections (HIV agents, wart virus) fungal infections (griseofulvin), and parasitic infections (malaria) are usually considered separately. First of all, youre not alone! However, for an unlucky few, even the small amount of quinine in tonic water can cause thrombocytopenia. Turkey. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Limit buying foods that are high in sodium, fat, sugar, or starch content. The CMT doctors all agree that it is more important to control high cholesterol than to worry about possible muscle weakness. Foods rich in Indole-3-carbinol: Indole-3-carbinol (I3C) is a . Charcot-Marie-Tooth disease is also called hereditary motor and sensory neuropathy. 11K subscribers in the FrenchyReps community. We need YOU! Cant say enough about how much it has helped me. The story of vaccinations and neuropathy is a long and controversial one. No, there is no diet that helps, although keeping the weight under control will help. >I know of no evidence that either of those drugs produces worsening of neuropathy either alone or in combination. However, if you are Vitamin D deficient, discuss supplementation with your doctor. If you have a tough day, making small progress and steps forward is always better than staying off track. Im 63 years old. 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. The drug can cause sleepiness or sedation, which is its primary useful effect and can make some motor tasks more difficult for CMT patients. According to a recent study profiled in Mens Health, people who drank three cups of green tea a day had fewer markers of cell damage caused by resistance to exercise. Other drugs on the medication list have less clear associations with CMT and excessive toxicity. 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. Not knowing allowed me to live life as I wanted and never stopped me. Dexmethylpenidate (Focalin), approved in 2001, is chemically similar to Ritalin, a drug familiar to many. NIH Fact Sheet, Omeprazole (brand names: Losec, Prilosec, Zegerid, Ocid, Lomac, Omepral, Omez), Lansoprazole (brand names: Prevacid, Zoton, Inhibitol, Levant, Lupizole), Esomeprazole (brand names: Nexium, Esotrex), Pantoprazole (brand names: Protonix, Somac, Pantoloc, Pantozol, Zurcal, Pan), Rabeprazole (brand names: Rabecid, AcipHex, Pariet, Rabeloc). In other words, the evidence is not established that progesterone is directly harmful, but the laboratory evidence is suggestive and needs more study. Charcot-Marie-Tooth (CMT) disease is the most common inherited neuromuscular disorder. Phone: 1-800-936-1363. The neurotoxic drug list was compiled by neurologists and is continually monitored for additions and corrections. Clams. (Photo by Young Lee). It is not easy to predict which medication will work for which patient in advance. Keto has proven to work for me. If you feel you are doing well incorporating these basic dietary guidelinesn but feel lost or are unhappy with your current energy levels or mobility, it may be worth meeting with a neuromuscular registered dietitian to help develop a more customized direction for you to take with your nutrition. Of interest is the fact that other anti-seizure medications, like phenytoin (Dilantin) or carbamazepine (Tegretol) also treat pain in some patients with neuropathy. It is not known whether AcipHex also carries the same small risk as the other drugs in this class, but it is possible. It was soo painful. It is a possible medical side effect that is unrelated to CMT. Nitrofurantoin (Macrodantin) is an antibiotic used for a variety of problems, but more extensively in past decades for UTIs. 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. 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. olive oil. Wash your utensils, cutting boards, and countertops with hot, soapy water after preparing each food item. Our doctors do not encourage their use. Keto has helped me stabilize my body and I train 6 days a week in the gym with no ill side effects except growth in muscle. These theoretical and laboratory tests must be weighed against your current hot flashes and related symptoms. This morning I woke up. A megadose is 10 times or more the RDA. Ours also has a ramp down into the shallow end for people that cant use regular ladders. 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. 18. It will be helpful to anyone who employess it, as well as me. I know of no cases associating neuropathy with Aciphex to date, though neuropathy is listed in the company information as a very rare association (less than one in 1,000) from its clinical trials conducted before drug release. How was the diagnosis process? 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. Got milk? Charcot-Marie-Tooth Association I know CMT affects folks in many ways, but seeing the list of symptoms was shocking. Symptoms usually begin in the feet and . Most toxic exposures are from much higher dosages, mostly of 250 mg or more a day. The only agent in that group that has been questioned about a detrimental effect on CMT is Paxil (paroxetine). There are 254 drug interactions with CMT (choline salicylate / magnesium salicylate) CMT (choline salicylate / magnesium salicylate) alcohol/food interactions. Ive had CMT for 45 years and Im only 48 so I have a little experience. The hammertoes seen in CMT are usually as a result of muscle imbalance and structural misalignment. Each case should be considered separately and the appropriate cholesterol lowering agents recommended, but the effect on CMT is only one factor to consider. Has anyone had success managing CMT symptoms with changes in diet? Swimming or any water type exercise (water aerobics etc)because of the low impact nature of such exercise rotines. According to our CMT experts, Botox is not recommended for individuals with CMT but can be used in areas that are not directly affected by CMT (the face, for example). 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. 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. 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. I've found it horrific. Website: bionews.com So, most people can use tonic water occasionally and in moderation as a remedy for leg nocturnal cramps. I jumped out of bed. In some cases, where this was not recognized promptly and treated effectively, death or hypoxic encephalopathy resulted. While there are thoughts on how some of these medications work, how Neurontin stops pain is not clear. Children younger than 24 months old should avoid added sugars. Eating significantly less than your BMR may actually stunt your weight loss efforts. HNF is a 501(c) 3 public charity enabling donors to support our mission safely. There is no clear indication that Peginterferon alfa-2a (Pegasys) can independently cause peripheral neuropathy or worsen CMT-related weakness. The damage caused by the disease leads to sensation loss and muscular weakness, along with other similar types of symptoms.(1). Good luck fellow CMT sufferers. The best known foods that affect the CYP enzymes are grapefruit and Seville oranges. Ultimate wishlist of CMT-friendly products on Amazon to make life with CMT easier. Studies by the manufacturer did not seem to uncover cases of muscle problems, but there are now a handful of reports, though not well-documented, with this drug as well. The risk is minimal if the drugs are indicated. With blueberries, pineapple, walnuts, and chia seeds on my shopping list, making chia pudding was an obvious choice. Vincristine has been proven hazardous and should be avoided by all CMT patients, including those with no symptoms. Vitamin K Vitamin K is a precursor for bone metabolism. 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. Eat it within an hour of getting up and you will jumpstart your metabolism for the day. Fatigue. 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. This article may contains scientific references. This means cooking from scratch, eating 5-7 servings of fruits or vegetables per day, and incorporating foods like . If you have Charcot-Marie-Tooth syndrome, moderate exercise is usually best, especially when combined with a healthy diet. Very efficiently written story. It's been my bible and beacon of hope for managing my CMT symptoms. A recent study found that a compound in spinach increase protein synthesis, which helps your muscles repair faster after you work out. 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. Calories in must be less than calories out in order to lose weight. Both Adriamycin and high-dose cytarabine carry possible but much less risk than certain agents better known to cause neuropathy such as platins, taxanes, thalidomide, suramin, and Velcade (bortezomib). aged 9 yrs and had many more my last one being 4 weeks ago. #1: The book! Good: Shellfish. 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. I have not checked with my doctor before starting the diet I did the experimentation myself. It may be downloaded here: Full_Medical_Alert_List.pdf, A printable card may be downloaded here: Medical_Alert_Card.pdf. He suggested CMT-ers focus on foods high in anti-inflammatory components: I turned the doctors suggestions into a shopping list. 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