Everybodys different Im just trying to remain ambulatory And Im doing very well at it. Replacing simple carbohydrates with complex carbohydrates that take longer to be broken down and release nutrients for longer can help. Taking downtime and implementing ways to destress is crucial to prevent stress neurotransmitters . Dont give up! In fact, dont let it keep you from doing anything you want to do. Care should be taken if there are any allergies to eggs or soy, as these are often sources of lecithin supplements. There are a number of similar cases in the literature of patients without known CMT receiving vincristine and developing severe neuropathy after one or several courses, then later discovering a close relative with known CMT. 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. BLC is for rising 10th-12th graders and current year high school grads to help gain practical Anyone else familiar with this typ. Required fields are marked *. We follow a strict editorial policy and we have a zero-tolerance policy regarding any level of plagiarism. Limit buying foods that are high in sodium, fat, sugar, or starch content. Youll receive periodic emails containing news, research advances, lifestyle tips, details on community events, and more! Vinblastine also causes neuropathy in individuals without existing neuropathy. Ive had CMT for 45 years and Im only 48 so I have a little experience. In fact, a single slice of pineapple contains 27calories with only 7grams of carbs. No gluten, no sugar or high fructose corn syrup. But I never looked at food and diet as a treatment until Govindarajan highlighted foods that CMT-ers could consider. Fatty fish, such as tuna and salmon, are good sources of omega-3 fatty acids and generally thought of as healthy. Also eliminate cakes, pies, doughnuts, cookies, croissants, muffins and all pastries and snack foods such as chips, most snack mixes and buttered popcorn. by 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. Why should you join GRIN?Its pretty simpleWe need YOU! My hip hurts a lot when I walk. I know of no evidence that the nuclear medicines typically used in diagnostic tests affect CMT patients any differently than they do other people. The changes described are not surprising following the loss of the hormone treatment, but testosterone has not been adequately examined for safety and efficacy in CMT patients to recommend use for neuropathy. However, everyone has unique diet needs related to energy levels, weight maintenance, etc. Unless the patient is hypersensitive or has an autoimmune problem, he/she should be able to tolerate the immunization. The agent was placed on the list based on the experience with other types of patients receiving the drug as part of their chemotherapy. I believe there are HRT formulations with lower progesterone content, but someone expert in that area would need to advise you on which formulation is most appropriate and the lowest risk for non-neurologic complications, such as endometrial hyperplasia. it usually includes some muscle strengthening as well as aerobic exercises to get the heart rate up. 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). The drug was approved in 2004, so it has quite a while to go before legal generics can be sold in the US. 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. The drug is still frequently used to treat the symptoms of neuropathy as long as the common side effects are tolerable; there are other similar drugs available with fewer side effects. Young Lee has been associated with respiratory depression and respiratory arrest. Good: Shellfish. As far as we know, there are no specific vitamins that help with CMT. I have had symptoms all my life and have always told my family that my body doesnt work right. Charcot-Marie-Tooth disease (CMT) is an inherited progressive disorder characterized by damage to the peripheral nerves. (Trip stats/details in comments) 1 / 20. Enjoy! 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. Here, peripheral nerves are those, which transmit nerve signals to different body muscles from the brain for controlling body movement and transfer sensory information to the brain from other parts of the body. 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 might be interesting for you as it's pretty much along the lines of what you are talking about. Diabetes mellitus produces different types of peripheral neuropathies. Hello Linda, I am 44 and I have been vegan for 15 years. Neither do I believe that there is any theoretical reason why this should make a neuropathy worse. I have a recumbent bike at home that I ride every day along with other exercises. (Photo by Young Lee). It is characterized by inherited neuropathies without known metabolic derangements. There does not appear to be a specific diet that helps or hinders those with CMT. Give a copy to your physician and any other medical professional who is involved in your care and treatment. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. But. I went to PT for 6 months. Midazolam (Versed) is a medication used to assist in the sedation, reduction in anxiety, and impairment of memory in patients undergoing procedures (including endoscopies). nuts like almonds and walnuts. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. The association seems to hold true only for CMT1A, the most common form, and HNPP (Hereditary Neuropathy with liability to Pressure Palsies); both are associated with defects in the PMP22 gene. only in hospital or ambulatory care settings, including physicians offices, that provide for continuous availability of resuscitative drugs and equipment and personnel trained in their use. This would apply to any patient. Charcot Marie Tooth is a type of inherited and progressive disorder, which characterizes damages to the patients peripheral nerves. 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. 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. These have not been tested in clinical trials for CMT patients, butinclude: Charcot-Marie-Tooth Newsis strictly a news and information website about the disease. Over the years, there have been a handful of single cases suggesting that Lipitor or other statins caused neuropathy, but no one thought the issue was very important. Rash, however, is a potential complication of any medication. My feet cramp. 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. At this point, there is no diet that has been proven to show improvement in CMT symptoms or disease process. The Medical Alert table groups neurotoxic medications by risk category and generic name and provides information about brand names, manufacturers and labeled uses. Wash your utensils, cutting boards, and countertops with hot, soapy water after preparing each food item. I have found no other similar reports of this kind in a review of the North American CMT database registry. Spinach: The latest study has revealed that spinach plays a major role to increase protein synthesis and hence, it helps in faster repairing of body muscles after you complete your regular workout. Being overweight can cause additional issues that can worsen the symptoms of the disease. While there is no evidence that vaccines affect the CMT genes directly, the issue has not been studied. Most CMT patients will not have a reaction other than the kind that might be expected in anyone. The CMTA is a 501(C)(3) nonprofit organization, EIN# 22-2480896. There are 254 drug interactions with CMT (choline salicylate / magnesium salicylate) CMT (choline salicylate / magnesium salicylate) alcohol/food interactions. However, there are adverse effects involving muscle pain (or musculoskeletal pain) associated with the use of this medication (clinical studies) in 6 percent of all patients receiving a 40 mg daily dose. I was diagnosed late in life and only had to stop working just over a year before i was 65 . Ever hear the term sugar crash? That term comes from the tired feeling you get after eating an excess of simple carbohydrates. The two used for bacterial infections with the most convincing link to neuropathy are metronidazole (Flagyl) and nitrofurantoin (Macrodantin, Furadantin, Macrobid). The only thing to be aware of and to tell the doctors about is that you will not recover from anesthesia as quickly as a person without CMT, so they need to take their time in moving you. You're more likely to have acne if your diet is full of foods and drinks like soda, white bread, white rice, and cake. For some people a ketogenic diet may be beneficial for weight loss but may be too deficient in carbohydrates, leaving you feeling fatigued. A recent review of the North American CMT database uncovered no cases of terbinafine complications, but it may be that no patient reported using the medication. Paramount+ is . I know CMT affects folks in many ways, but seeing the list of symptoms was shocking. 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. It is unclear if CMT patients are more vulnerable. I am not aware of any problem with Propofol as an anesthetic in CMT patients. Avoiding alcohol, Fluoride, coffee and eating organic has helped me. This means cooking from scratch, eating 5-7 servings of fruits or vegetables per day, and incorporating foods like avocados, olives, nuts and cold-water fish into your diet while limiting processed carbohydrates and sugar. 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