Make a donation to the Hereditary Neuropathy Foundation to help find treatments and cures for those living with Charcot-Marie-Tooth and Inherited Neuropathies. These are involved in transmitting nerve signals from the brain to the muscles to control movement, and sensory information from the rest of the body to the brain. Dr. Florian Thomas is a neurologist with expertise in Charcot-Marie-Tooth at Hackensack University Medical Center and Hackensack Meridian School of Medicine at Seton Hall University. 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. You should avoid or reduce the consumption of any type of processed flour food items, like rice, pasta, and bread. 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. This small risk should be weighed against the potential benefits of additional chemotherapy. Enjoy! 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 recommended under any circumstances. Alternatively, you may try for other green leafy veggies, like swiss chards, collards, and kale to include in your diet. No. Vitamin K Vitamin K is a precursor for bone metabolism. Nitrofurantoin (Macrodantin) is an antibiotic used for a variety of problems, but more extensively in past decades for UTIs. The next day I felt horrible and my legs were so weak I thought they were going to collapse under me. Description of the most prevalent types of CMT. French fries can also cause obesity. I dont have a recipe. Wash your hands for at least 20 seconds with soap and warm or cold water before, during, and after preparing food and before eating. Actually, they might be right. I had my first op on my feet The effects are uncommon and directed directly against muscle and not on the nerve or worsening of CMT. These include most breads, crackers, pasta and breakfast cereals. There are other medications not mentioned that can possibly cause the described symptoms, especially certain nausea medications and some others. There is no mention of whether any CMT patients were included in this large trial. Cyclosporin A can cause the same problem, but even more rarely. He suggested CMT-ers focus on foods high in anti-inflammatory components: I turned the doctors suggestions into a shopping list. Pensacola, FL 32502 Similar to eggs, it might depend on how the milk is used that causes the flare-up. What are the best foods to eat when you have gout? CMTA Patient/Family Conference I attended, 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. The issue is complex because CMT, kidney failure and diabetes can each cause neuropathy. Eight ounces of lowfat chocolate milk has 158 calories, 2.5 grams of fat, 26 grams of carbs, 425 grams of potassium, and 8 grams of protein. Shutterstock. There is no evidence that CMT patients would fare differently from others and PHN can be particularly painful for these individuals. Paramount+ is . He graduated from NC State University in 2013 with degrees in economics and international studies. For most women BMR is 1200-1500 calories per day; men are 1500-1800 calories per day. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The FDA has banned the use of quinine for nocturnal leg cramps because of its serious side effects. One such example is choosing low fat instead of full fat yogurt. Klonopin is a benzodiazepine. 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. It will raise blood sugar quickly and keep it high for a long time because the fat takes a while to digest. The sugar and carbohydrates in these foods tend to get into your blood. 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. My hip hurts a lot when I walk. Stay away from fatty foods and alcohol. nuts like almonds and walnuts. It reminded me of one of my takeaways from the CMTA Patient/Family Conference I attended earlier this month. 19. Midazolam (Versed) is a medication used to assist in the sedation, reduction in anxiety, and impairment of memory in patients undergoing procedures (including endoscopies). Charcot Marie Tooth is a type of inherited and progressive disorder, which characterizes damages to the patients peripheral nerves. Along with disc problems and Arthritis in lower back. That is absolutely the best starting point. Eating breakfast not long after getting up can also be important, as this kick-starts the metabolism and can help burn calories faster. I am 66 yrs. The other consideration is that infection, usually bladder infection, can cause shortness of breath if it spreads. Steroids have not shown to be effective in strengthening muscles affected by CMT. In fact, eating anything within 1 hour of getting up will rev up your metabolism, so think twice before skipping breakfast. About one in every eight American adults have high levels of total cholesterol. The foods that you eat need to do more than just fill you up. The neurotoxic drug list was compiled by neurologists and is continually monitored for additions and corrections. It is known that most lipid-lowering therapies, including statins, fibrates, and niacin, may cause muscle toxicity and Ezetimibe is touted as an alternative. He also needs the advice of a neurologist regarding the CMT. 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. The program offers adaptive free online classes for everyone! Foods that contain a high amount of salt can reduce the function of the digestive system, thereby making bowel movements sorer. Donate While You Shop & Support CMT Awareness! Her symptoms dissipated in four months. As far as we know, collagen peptides should not pose a problem. These side effects are also present with conventional antidepressants. However, others may need to limit even more foods and beverages. Consuming a healthy and balanced diet alongside a tailored exercise plancan play an important part in managing weight. Charcot-Marie-Tooth Association Im going carnivore as theres many in CMT groups who tried it and are improving. This new round of concern is based on a single large study in Denmark that found that people who had neuropathy with no known cause were more likely to be taking a statin. Ezetimibe (Zetia) is the first of a new class of antihyperlipidemic agents, the cholesterol-absorption inhibitors. Read about CMT updates and the latest in CMT research. Neurologist? It is adapted from something my mother taught me. I eat a lot of fruit juices sugar in it. fruits such as strawberries, blueberries, cherries, and oranges. Diagnosed in early 20s. I dont have CMT but both my husband and 6 year old son do. Keto has proven to work for me. It may help to really examine your eating habits during the shelter-in-place and identify the parts that significantly changed from what you were doing before. 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. I am 71 years old now. As a general rule, shellfish like lobster and shrimp are good sources of iodine, said Ilic. Vincristine in particular is an exceptionally high risk for CMT1A patients and can result in severe, irreversible neuropathy after one or two standard doses. 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. Cameron Whitman/Stocksy United. The top food sources of B vitamins are leafy greens, salmon, eggs (with yolk), shellfish, poultry, beef, fortified whole grains and sunflower seeds. 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. This article may contains scientific references. It appears that everyone who developed PHN actually had true shingles, despite the vaccine and not because of a vaccine reaction. This leaner meat is nonetheless high in purines. Any Help for me? Most people dont have problems with this drug unless they take it for an extended period of at least a month or more. Anyone who notices a significant decline in strength after taking Ambien should consult his or her physician. Avoid if you can! Climbing the stairs is not required. The most important thing is to just keep going, stay consistent and try not to let the slow progress derail you. Its possible that more local weakness than average will be produced in CMT patients, especially if the injections are in the legs. 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. , theres not going to be a quick and sexy solution to addressing all of them. A while to digest cherries, and kale to include in your diet professional medical or... To just keep going, stay consistent and try not to let the slow progress derail you both... 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