L-histidine is an essential amino acid that is supplied in adequate amounts in any good diet. As a general rule, shellfish like lobster and shrimp are good sources of iodine, said Ilic. Pineapples are packed with bromelain and papain, two enzymes that have anti-inflammatory properties, which is great for recovering muscles. HNF is a 501(c) 3 public charity enabling donors to support our mission safely. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. You should reduce your caffeine and alcohol intake to improve the quality of your sleep and in turn, reduce tiredness and fatigue. Fatty fish, such as tuna and salmon, are good sources of omega-3 fatty acids and generally thought of as healthy. is strictly a news and information website about the disease. WE ARE THE DRIVING FORCE BEHIND CMT RESEARCH FOR A CURE. It is unclear if CMT patients are more vulnerable. Ive thought a lot about diet now that Im in my late 20s. My hip hurts a lot when I walk. Pineapples do not contain Papain, thats from Papayas. 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. We recommend a heart-healthy version of scrambled eggs 1 whole egg and 1 egg white, scrambled together with oz of lowfat cheese. First of all, youre not alone! 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. Klonopin is a benzodiazepine. mashed.com - Jennifer Goldsmith. 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. Good luck fellow CMT sufferers. Some foods rich in folate include: leafy green vegetables beans legumes nuts breads cereals Dietary sources also influence serotonin levels in your body. There would seem to be no problem with the topical application of Mycolog II cream. It does not provide medical advice, diagnosis, or treatment. Avoid processed foods as much as possible. There is not one general recommendation for everyone to help lose weight; its a matter of looking at your individual habits and making adjustments for the most success. I enjoy the deep water exercises because my feet dont touch the bottom and I love being suspended in the water. I eat a lot of fruit juices sugar in it. Get plenty of sleep! Because milk has more potassium and electrolytes than water, it does a better job at rehydrating the body after exercise. PLEO-CMT was a 15-month double-blind study that assessed the efficacy and safety of two doses of PXT3003 as compared with placebo in 323 patients (age range, 16-65 years) with mild-to-moderate. Charcot-Marie-Tooth, or CMT, is the most commonly inherited peripheral neuropathy and is found worldwide among all races and ethnic groups. I went to PT for 6 months. While it is not known if that finding can be applied to CMT muscles, it is hopeful news. Cyclosporin A can cause the same problem, but even more rarely. Worst mistake of my life was going vegan with CMT. Most people dont have problems with this drug unless they take it for an extended period of at least a month or more. 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.. There are no reported contraindications for persons with peripheral neuropathies taking these over-the-counter drugs. My digestive system is shot.. the atrophy ..ugh. French fries can also cause obesity. Minds constantly cloudy and the neuropathy is insane. See a Physical Therapist. Brought to you by Livestrong There are many medications that reduce serum cholesterol levels, but the statins are the most effective and most widely used. I do not know of any documented case of someones CMT worsening because of birth control pills or HRT. Add possible constipation to the many reasons a sweet dessert should be an occasional, not regular, thing. Alternatively, you may try for other green leafy veggies, like swiss chards, collards, and kale to include in your diet. Supporting patients and families with critical information to improve quality of life, and funding research that will lead to treatments and cures. Vincristine has been proven hazardous and should be avoided by all CMT patients, including those with no symptoms. Constant fatigue can sometimes be inevitable with CMT, but making sure your nutrition is optimized will help minimize the controllable aspect of your fatigue. What are the best foods to eat when you have gout? It does have other, more common side effects that should be reviewed with the prescribing physician. My feet wake me up. Raghav Govindarajan, MD, a neuromuscular physician at the University of Missouri, said at the conference that although he works at a CMTA Center of Excellence, many factors outside the clinic affect how well a person lives with CMT. The vaccine was studied in about 38,500 adults, half of whom received the vaccine; the subjects were followed for an average of 3 years. There is no known association between biotin and neuropathy. I suffer daily with chronic pain. The study showed a modest improvement in the rat model of CMT1A but has not yet been duplicated. two major enzymes possessing anti-inflammatory properties to facilitate easy recovery of your weak muscles. There is very little information about this issue, especially noting the large number of patients taking these drugs. It was soo painful. 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. 4 years ago due to some food allergies that my husband has I switched to a whole food plant based/healthy vegan way of eating. Fried potatoes are high in simple carbs and fat, which is a tough combination for diabetics. Pickled or fermented foods, such as sauerkraut, kimchi, caviar, tofu or pickles. The most important thing is to just keep going, stay consistent and try not to let the slow progress derail you. September is CMT Awareness Month, and my social media feeds have been flooded with inspirational quotes and infographics related to Charcot-Marie-Tooth (CMT). Hi 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. (Photo by Young Lee). Diagnosed in early 20s. Exercise is so important. 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. Alcohol was removed from the neurotoxic drug list in July 2004. Muscle cramps are rarely seen, but could be more common in patients prone to cramps, such as patients with CMT. 800.606.2682 Taxols also pose a high risk to people with CMT. Foods to Avoid on Chemo. Dr. Greg Stilwell responds: Botox has been used successfully in spastic contractures, as well as hyperhidrosis (sweaty feet). The next day I felt horrible and my legs were so weak I thought they were going to collapse under me. Neurotoxicity is the capacity of chemical or biologic agents to induce functional or structural changes in the nervous system resulting in tissue injury. Most CMT patients will not have a reaction other than the kind that might be expected in anyone. Nystatin is a completely unrelated antibiotic drug that long predates statin cholesterol drugs and is primarily used to treat fungal infections; Nystatin is NOT associated with neuropathy. Inderal is not associated with causing or worsening neuropathy or CMT. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. 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. Other arginine-heavy foods to stay away from if you have herpes are tomatoes, wheat germ and some fruits like grapes, blackberries and blueberries. Having your physician see the clawing and examining the hand is needed for specific recommendations, but the narcotics would be a highly unlikely underlying cause. 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. Had symptoms all of my life. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. People who are most likely to have low potassium levels include: Those who take diuretics in order to treat high blood pressure or heart disease Through the years, I try to take phiysical theraphy, ar least quarterly, and before the pandemic, I was taking aquatic theraphy. fatty fish like salmon, mackerel, tuna, and sardines. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. This class of medication is not known to affect CMT or cause neuropathy and is not contraindicated in CMT in general. Dose C.M.T affect your ability to eat normally thank you. But. Midazolam (Versed) is a medication used to assist in the sedation, reduction in anxiety, and impairment of memory in patients undergoing procedures (including endoscopies). To our knowledge, Anavar hasnt been tested but anabolic steroids are not advised in neuromuscular patients even though they seem like a good idea. Courtney. Glenolden, PA 19036. There is very limited information about nutritional and dietary supplements and peripheral neuropathy. Can this diseases cause a metallic taste in mouth? Symptoms usually begin in the feet and . There is no mention of whether any CMT patients were included in this large trial. Ive been trying to go vegan. Access our archives since 2014. 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. 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. Zetia can cause toxicity to the liver, especially in patients that already have liver problems, such as chronic hepatitis C. An internist or gastroenterologist would be better to consult about these hepatic (liver) issues. Moderate to low carb diet seem to do the best . Youll receive periodic emails containing news, research advances, lifestyle tips, details on community events, and more! Raw seafood: Oysters, most types of sushi, and other kinds of raw or undercooked seafood should be off the menu for now. I had a Bilateral Achilles Tendon Release Op at the age of 2yrs +. This is a complex situation. Cant say enough about how much it has helped me. Tea. Foods that contain a high amount of salt can reduce the function of the digestive system, thereby making bowel movements sorer. [ 1, 2] These disorders are also known as hereditary motor and sensory neuropathies (HMSNs); they are distinct from hereditary sensory neuropathies (HSNs) and hereditary motor . 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. Calories are the specific units of energy found in foods. This morning I woke up. No, there is no diet that helps, although keeping the weight under control will help. As a child and young adult I had a high metabolism and never had to worry about my weight (even with my disability). The effects of progesterone on CMT1A are still investigational. Your email address will not be published. Overdosing of Midazolam may be a concern in CMT patients and it sounds to me that since you have undergone this procedure before without the use of Midazolam, it would be safer to do the same thing again. A good occupational therapist may recommend some tools to facilitate hand and finger use. There are other medications not mentioned that can possibly cause the described symptoms, especially certain nausea medications and some others. Ive noticed the past three weeks Ive been dropping several items that I grab ahold of..its pretty scary. 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. 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. Please consult with your physician before consuming tonic water for nocturnal cramps! Other drugs on the medication list have less clear associations with CMT and excessive toxicity. Join us as we explore the power of Nutrition with CMT patient and Functional Medicine Coach Paul Fowler. Only those with respiratory involvement (very rare) or vocal cord paralysis (a very rare variant) may have problems with anesthesia above that seen in the general population. Weight gain during the last nine months or so is very common. I made a broccoli curry with turmeric, but I wasnt happy with it. However, the risk is likely very small in general, depending on which muscles are injected. My feet cramp. There are 254 drug interactions with CMT (choline salicylate / magnesium salicylate) CMT (choline salicylate / magnesium salicylate) alcohol/food interactions. You should reduce the intake of fatty, salty and sugary drinks or food items wherever it is possible. There are no contraindications with dental anesthesia. Any Help for me? The feedback link Was this Article Helpful on this page can be used to report content that is not accurate, up-to-date or questionable in any manner. A megadose is 10 times or more the RDA. Another common issue for children that they typically outgrow, milk can trigger eczema for people who are otherwise are not lactose intolerant. The only agent in that group that has been questioned about a detrimental effect on CMT is Paxil (paroxetine). 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