Thrombocytopenia is a drop in the bloods platelet count that can lead to internal and external bleeding as well as a related condition that can cause permanent kidney damage. However, there are other unrelated risks that the patient should discuss with the prescribing MD. 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. :-), Sorry but a high plant diet will make your CMT symptoms worse. It will be helpful to anyone who employess it, as well as me. Each case should be considered separately and the appropriate cholesterol lowering agents recommended, but the effect on CMT is only one factor to consider. Required fields are marked *. Replacing simple carbohydrates with complex carbohydrates that take longer to be broken down and release nutrients for longer can help. Most associations have not been proved after larger scrutiny. So, most people can use tonic water occasionally and in moderation as a remedy for leg nocturnal cramps. The vast majority of patients have no problems with neuropathy on this drug, but if you use it, the degree of neuropathy-related weakness should be monitored. I was diagnosed late in life and only had to stop working just over a year before i was 65 . I had my first op on my feet Foods that contain a high amount of salt can reduce the function of the digestive system, thereby making bowel movements sorer. Sugar: Sugar is a complete source of empty calories as it have 100% of energy and no other nutrient. Some foods rich in folate include: leafy green vegetables beans legumes nuts breads cereals Dietary sources also influence serotonin levels in your body. Fiber acts as a prebiotic, so it helps feed beneficial bacteria in your gut. The treatment is rarely associated with certain eye and retinal problems that are not at issue in the most common forms of CMT. We should note that these studies were done on non-CMT muscles, so we cant offer any guarantees as to how it will work for CMT muscles. I noticed a decline in the last few years, but I attributed everything to the aging process. Some experts recommend tapering the dose down over a period of one week for every month youve been on the drugsix to eight weeks if youve been on the drug for six to eight months, as a rule of thumb. 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. Steroids have not shown to be effective in strengthening muscles affected by CMT. Fatigue. Wahls protocol is a modified Paleo diet, which may have benefits for some, but again may be too low in carbohydrates for others. pineapples: pineapples come with papain and bromelain, i.e. Considering this fact, we should say that green tea is applicable for CMT patients, who have weak body muscles. Klonopin is a benzodiazepine. I do not know the literature well, but do not think the success with these types of agents has been terrific in treating perimenopausal symptoms, though the risk of trying is low. 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. Worst mistake of my life was going vegan with CMT. 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. Because a person with CMT cant exercise as hard as someone without CMT, it is important to watch your diet. The hammertoes seen in CMT are usually as a result of muscle imbalance and structural misalignment. The process, in general, lasts for one to four weeks and then improves depending on the severity of the process. Actually, they might be right. But foods that are high in B 12 should be avoided mostly. Eating breakfast not long after getting up can also be important, as this kick-starts the metabolism and can help burn calories faster. Its a unique opportunity for our community to come together and celebrate and raise awareness and funds for CMT research. Any Help for me? About one in every eight American adults have high levels of total cholesterol. However, a healthy diet is always good and this list of foods may help you optimize your exercise sessions while also helping you lose weight. Hi im 34 and have cmt type 1A, iv read alot of bad things how people end up life wise that have cmt but there must be people out there that life a long an able life, i would love to hear from people, regards Grant. Salty foods . 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. Anyone else familiar with this typ. 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. Brought to you by Livestrong two major enzymes possessing anti-inflammatory properties to facilitate easy recovery of your weak muscles. A salmon meal is another that is well within my comfort zone. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Eatingsmaller meals with regular healthy snacks in between, rather than large meals, can alsohelp reduce fatigue. 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. It is no secret that millions of people struggle with their weight. Please make sure you JOIN the Global Registry for Inherited Neuropathies (GRIN). 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. HNF is a 501(c) 3 public charity enabling donors to support our mission safely. 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. No, but it is advisable to eat healthily and avoid excessive weight gain. However, immunosuppression is a required treatment in order to prevent rejection of the transplant, so the issue and relative risks and benefits should be discussed with your local physicians. The related drug lansoprazole was reported in 2005 to cause neuropathy in one patient. CMT i.e. mashed.com - Jennifer Goldsmith. Participate in an HNF-hosted event or create your own. Anti-inflammatory foods. The statin drugs are safe for most patients with CMT. Charcot affects the bones, joints, and soft tissues of the foot or ankle. No gluten, no sugar or high fructose corn syrup. It reminded me of one of my takeaways from the. 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. We need YOU! It is a possible medical side effect that is unrelated to CMT. Your email address will not be published. Charcot-Marie-Tooth disease results in smaller, weaker muscles. As far as we know, there are no specific vitamins that help with CMT. Suite 700 This is a complex situation. Pickled or fermented foods, such as sauerkraut, kimchi, caviar, tofu or pickles. I made a broccoli curry with turmeric, but I wasnt happy with it. Dexmethylpenidate (Focalin), approved in 2001, is chemically similar to Ritalin, a drug familiar to many. PO Box 105 However, there's one food people should avoid when taking their daily statin. Shania's new album "Queen of Me" is out now! It is difficult to sort out which effect is at work in this instance. You should reduce your caffeine and alcohol intake to improve the quality of your sleep and in turn, reduce tiredness and fatigue. info@cmtausa.org We are grateful for your generosity in supporting our mission! Ever hear the term sugar crash? That term comes from the tired feeling you get after eating an excess of simple carbohydrates. I had a Bilateral Achilles Tendon Release Op at the age of 2yrs +. Ive noticed the past three weeks Ive been dropping several items that I grab ahold of..its pretty scary. But foods that are high in B 12 should be avoided mostly. This could include replacing processed-flour goods with unprocessed grain products, such as bread, pasta, and rice. Discovered in 1886 by three physicians, Jean-Martin Charcot, Pierre Marie, and Howard Henry Tooth, CMT affects an estimated 2.6 million people. 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. Because of the addition of so many new medicines over recent years, name similarities are inevitable. If you have Charcot-Marie-Tooth syndrome, moderate exercise is usually best, especially when combined with a healthy diet. It covers the first half of my journey, a 32,600km cycle from Ireland to Australia. Tim, Im looking for solution. Anyone who notices a significant decline in strength after taking Ambien should consult his or her physician. The more severe the neuropathy, the more susceptible the patient to the exposure of the neurotoxin. Most Metronidazole (Flagyl) treatments are 2 weeks or less and constitute very limited risk. (Photo by Young Lee). The next day I felt horrible and my legs were so weak I thought they were going to collapse under me. The other day. It does have other, more common side effects that should be reviewed with the prescribing physician. Diphtheria infection can cause severe demyelinating neuropathy and is potentially fatal. Treatment with onapristone, a progesterone antagonist, has improved the neuropathy of the CMT1A rat, but has not been tested in humans yet. Recent studies have confirmed what five year olds have been telling us for years chocolate milk is a health drink. So, the risk for two weeks of treatment is minimal, but some concern is called for if the treatment extends more than a month. Certainly, the underlying problems of CMT, Charcot joint, arthritis and spine disease must also be considered by your physician. It can also increase the risk of diabetes, which can cause further damage to the feet, as well as the heart and lungs. Many of the cancer trials used the drug in combination with other chemotherapy drugs that often cause neuropathy, but studies did not find a further increase with the Avastin. Alternatively, you may try for other green leafy veggies, like swiss chards, collards, and kale to include in your diet. Try a modified keto diet! No, there is no diet that helps, although keeping the weight under control will help. There were a few scattered suspicions with Tagamet but not Zantac. Just "OWN" It - Build Your Own Fundraiser! Hepatitis is a far more serious condition than a reaction to the immunization for hepatitis. 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. I enjoy cooking and was familiar with ingredients such as ginger, bok choy, celery, beets, salmon, and broccoli. The top food sources of B vitamins are leafy greens, salmon, eggs (with yolk), shellfish, poultry, beef, fortified whole grains and sunflower seeds. Charcot-Marie-Tooth (CMT) disease is the most common inherited neuromuscular disorder. Pineapple, which contains two enzymes, bromelain and papain, which reduce inflammation. I know of no special concerns with Versed and CMT unless it is used for an extended period of time, unlike the brief exposure for anesthesia before surgery. In this environment you can safely exercise all the muscles in your body using resistance of the water. You should reduce the intake of fatty, salty and sugary drinks or food items wherever it is possible. There has been considerable research on vitamin B12 and some forms of B12 such as methylcobalamin and neurologic function. Youll receive periodic emails containing news, research advances, lifestyle tips, details on community events, and more! I was born with CMT 1a in 1966 but not officially diagnosed until 31 yrs later at Walton Neurosurgical Centre, Liverpool. green leafy vegetables, such as spinach, kale, and collards. Foods to Avoid on Chemo. Email: [emailprotected] 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. Lupron suppresses testosterone levels in both men and women, which is an important factor in muscle bulk. These foods digest too quickly and cause a spike in your blood sugar. Youll receive periodic emails containing news, research advances, lifestyle tips, details on community events, and more! Any suggestions?? I try to eat fewer calories and, for environmental and health reasons, Ive started to limit my consumption of red meat. Definite gastritis or duodenitis is a much stronger reason for use and for potential benefit than simple, uncomplicated heartburn. Foods rich in Indole-3-carbinol: Indole-3-carbinol (I3C) is a . We just came to know about CMT in our son. Elevated CK levels, in general, are not common with CMT. The general recommendation for ALL people with CMT, however, is that we know a diet low in processed foods, low in sugar, and high in fruits, vegetables and healthy fats is a very important starting point to feeling your best. We follow a strict editorial policy and we have a zero-tolerance policy regarding any level of plagiarism. The short answer is there is no one-size fits all. There is no information about a positive or negative reaction from a patient with CMT with any of these treatments. If it took you nine months (March to December) to gain the weight, you can count on it taking at least nine months to lose again. Right now, I am doing the diet at 100% for the next 100 days. This is an emerging and exciting new class of drugs used to treat several autoimmune diseases. This article does not provide medical advice. I am 5' 1" weighing 155 lbs. Intravenous heroin has very rarely been linked to nerve injury, but almost certainly because of toxic and unintended side products in the injections used by some addicts. fruits such as strawberries, blueberries, cherries, and oranges. Focusing on a varied diet with adequate carbohydrates and a wide variety of fruits and vegetables will likely meet all of your micronutrient needs. There is not a special diet for people that have CMT. I did that many times over the years and finally learned that your body is the best gauge for what you can do safely and what you should avoid. Built to get you more shares and more followers. Suite 700 Adriamycin is occasionally reported to cause neuropathy, but not with the frequency or severity of some other chemotherapy drugs such as vincristine, Cisplatin, suramin, and taxol. How Dangerous Is Charcot Marie Tooth & Is It Contagious? I have no energy and stay sleepy Find an exercise program that you enjoy, whether it be biking or swimming or the gym. Ive had CMT for 45 years and Im only 48 so I have a little experience. Garlic and Root Vegetables Garlic, onions, ginger and turmeric have anti-inflammatory properties. 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. Thank you!! what would be better than pairing pineapple slices with any low-fat cottage cheese to enjoy a But, Govindarajan said at the CMTA conference, the typical American diet encourages inflammation with calorically dense foods and an abundance of sugar and carbohydrates. Similar to eggs, it might depend on how the milk is used that causes the flare-up. Naratriptan (Amerge) is a commonly prescribed migraine treatment in the triptan class and is similar to Imitrex (sumatriptan). Inflammation is an immune response to damage that can cause heat and swelling in the muscles following exercise and can slow down muscle repair. Even though eggs have suffered from a bad reputation for a long time, they have finally started to make a comeback. What exercising can I do I,am weak using cane. To my knowledge, there are no studies using L-histidine in patients with neuropathies and none in hereditary neuropathies. It is unclear if CMT patients are more vulnerable. Unpasteurized dairy and under-cooked eggs: If it's got a runny yolk, avoid it. Some snack foods and store-bought packaged toddler foods are high in salt. Common and infrequent reactions include nausea, odd numbness, chest tightness, dizziness, drowsiness, and fatigue. >I know of no evidence that either of those drugs produces worsening of neuropathy either alone or in combination. Ultimately, if you choose to take a lecithin supplement, you would be wise to consult your doctor in order to establish a safe dosage. Plants are not our friends. If these substances damage normal nerves, patients who already have a nerve disease, either hereditary as in CMT or acquired in diabetes, are more susceptible to these substances. Foot deformities such as hammertoes and high arches also are common. It is suspected but unknown whether a mild version of the process commonly occurs because these patients tend not to go to a doctor; however, a mild form of GBS in a patient with underlying neuropathy from CMT could lead to the symptoms presented. Foods such as halibut, nuts, nut butters, spinach, potatoes with skin, black-eyed peas, and spinach are rich in magnesium. WE ARE THE DRIVING FORCE BEHIND CMT RESEARCH FOR A CURE. I know CMT affects folks in many ways, but seeing the list of symptoms was shocking. Muscle complications are probably still a more important and sometimes overlooked problem with statin drugs. Decisions about steroid use or dose should be weighed against the expected benefit gained for the arthritis and the severity and type of the arthritis. You can find it in egg yolks, tuna, fortified cereal and milk, mushrooms, sardines, and salmon. I am trying to find info to learn more about CMT any advice? Pensacola, FL 32502 This is one of the most common things Ive heard from patients and clients in recent months. The agent was placed on the list based on the experience with other types of patients receiving the drug as part of their chemotherapy. In addition to complex carbohydrates, micronutrients play an important role in providing your body with usable energy from food. The FDA has banned the use of quinine for nocturnal leg cramps because of its serious side effects. It is not easy to predict which medication will work for which patient in advance. What are all foods to eat wth cmt and what avoid, Trying to learn more on cmt what to eat and what not to having weight gain and in lot of pain. There are no contraindications with dental anesthesia. 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. He graduated from NC State University in 2013 with degrees in economics and international studies. Neurotoxicity is the capacity of chemical or biologic agents to induce functional or structural changes in the nervous system resulting in tissue injury. . 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