I am 66 yrs. And. The more severe the neuropathy, the more susceptible the patient to the exposure of the neurotoxin. It does not provide medical advice, diagnosis or treatment. The opinions expressed in this column are not those of, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to. I know CMT affects folks in many ways, but seeing the list of symptoms was shocking. Most seem to carry similar risk to others with neuropathy from other causesdiabetes, etc. https://charcot-marie-toothnews.com/charcot-marie-tooth-and-diet/, https://www.hnf-cure.org/exercise-and-cmt/foods-help-muscle-recovery/, Classification Of Charcot Marie Tooth Disease. The vitamins included are folate, vitamin B6 and vitamin B12, which qualifies the pill as a food supplement and not a drug. Her symptoms dissipated in four months. Create a Facebook Fundraiser to help raise funds for CMT research.Make sure to choose, Hereditary Neuropathy Foundation as your non-profit. However, the risk is likely very small in general, depending on which muscles are injected. Vincristine has been proven hazardous and should be avoided by all CMT patients, including those with no symptoms. what would be better than pairing pineapple slices with any low-fat cottage cheese to enjoy a I am 43 years old and have CMT. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Rash, however, is a potential complication of any medication. I weighed 230lbs and I am now down to 166lbs. Therefore, you should try to opt for low fat alternatives to foods that can be high in fat. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. I was pretty active as well, over the years though as I have gotten older and as my activity level has decreased due . There is some evidence but not a well-accepted belief of mild effects on muscles away from the injection sites. It reminded me of one of my takeaways from the. Other than B6, the B vitamins have no known risk. The small risk of the agents you mention is based solely on small numbers of possible or probable but not definitive case reports in cancer patients; no reports of use of these agents in CMT patients is known. 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. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Sign up now! The most common are dizziness, lightheadedness, weakness, headache, stomach upsets, sleep disturbances, and anxiety. Click here for an in-depth summary of a study on neurotoxic medications and how they affect CMT patients. You may also experience loss of sensation and muscle contractions, and difficulty walking. Charcot-Marie-Tooth (CMT) disease is the most common inherited neuromuscular disorder. Phone: 1-800-936-1363. Just "OWN" It - Build Your Own Fundraiser! Also this demonizing red meat causes neuropathy and increase in dysfunction, I have CMT. sugar should be consumed in moderation. 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. By the end of the day I was wiped out. Fill in the required fields to post. Positively, you may easily manage your body weight and other major Charcot Marie Tooth symptoms by simply having a healthy yet balanced diet combined with a tailored exercise plan.(1). Weight gain during the last nine months or so is very common. Access our archives since 2014. Tim, Im looking for solution. Reglan is associated with other neurological side effects, most commonly movement disorders, which are usually recognizable by treating physicians. Guillain-Barr syndrome (GBS) can occur in CMT patients, but there is no consensus on whether the incidence is higher than for the general public. Try eating a diet rich in healthy fats and fiber. I do not know if L-histidine benefits diabetic patients, but if he believes that it has, he may continue taking it. My brother likes his pudding thicker than I do. For the person who works in a hospital setting, hepatitis might be a real threat. 800.606.2682 It may be downloaded here: Full_Medical_Alert_List.pdf, A printable card may be downloaded here: Medical_Alert_Card.pdf. avoiding caffeine (found in tea, coffee, cola and energy drinks) and nicotine (found in tobacco) if you have tremors (shaking) - they can make this worse avoid medicines that can cause nerve damage - Charcot-Marie-Tooth UK has a list of medications to avoid or use with cautionif you have CMT Right now, I am doing the diet at 100% for the next 100 days. For most people it has been a combination of stress, uncertainty, depression, lack of routine, inability to fit in traditional physical activity and lots of free time to eat. I was evaluated at a high risk of falling and a PT gave me a series of exercises. I have found no other similar reports of this kind in a review of the North American CMT database registry. Working on your diet and exercise on a daily basis will yield results over time, but it will likely take longer than you hoped. Some of these are very serious. Alcohol was removed from the neurotoxic drug list in July 2004. Glenolden, PA 19036. Even though eggs have suffered from a bad reputation for a long time, they have finally started to make a comeback. I eat a lot of fruit juices sugar in it. Yes! Consuming foods that are high in fat limits the growth of good bacteria in your gut. Being overweight can cause additional issues that can worsen the symptoms of the disease. 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. 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. Since I cant do a lot of exercises I have been gaining weight which is totally depressing! Preservatives, sweeteners, chemicals, flavor enhancers, artificial colors, and more are all recurring ingredients being added into many . The first is tacrolimus (FK-506, ProGraf), which rarely causes a neuropathy with demyelinating features, probably by triggering an immune reaction. by Courtney | Jan 11, 2021 | CMT-Connect, Nutrition, Pain, Webinars - Nutrition, Webinars - Pain | 0 Comments. Get To Know What Possibly Could Be Causing Your Symptoms! I have many symptoms of CMT after a grandaughter was diagnosed with it at Shriners Hospital in St. Louis. Protein is necessary but shouldnt be consumed excessively, as this can lead to weight gain. It's a super easy and great way to spread awareness and support CMT Research. "Fruited yogurts, often in cup to . In this way, green tea helps you losing bodyweight even you fail to do any exercise or involve in low-intensity exercise. 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. When I started reading your post I thought it could have been mine. If the CMT patient has a common reaction to an immunization, the problem will be transitory. Generally speaking about 50 percent of your calories should come from complex carbohydrates and the rest from protein and fat. There is no information about a positive or negative reaction from a patient with CMT with any of these treatments. Definite gastritis or duodenitis is a much stronger reason for use and for potential benefit than simple, uncomplicated heartburn. I know of no evidence linking their use to worsening or causing neuropathy, abnormal muscle cramps or muscle spasm; however, the timing raises the question in this case. Botulinum toxin (Botox) is complicated for CMT patients. It is no secret that millions of people struggle with their weight. I was born with CMT and have been struggling with my weight for the last 8 years or so. Dexmethylpenidate (Focalin), approved in 2001, is chemically similar to Ritalin, a drug familiar to many. Got milk? Especially avoid processed deli turkey. A simple google search would of told you this. 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. green leafy vegetables, such as spinach, kale, and collards. Suite 700 Avoid processed foods as much as possible. 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. However, everyone has unique diet needs related to energy levels, weight maintenance, etc. I do not know of any documented case of someones CMT worsening because of birth control pills or HRT. The risk of worsening the neuropathy appears to be very small, but incompletely known, while the benefit of the drugs is well established. Venlafaxine (Effexor) is a popular and widely used antidepressant that is also used to treat neuropathic pain, especially well studied in patients with diabetic neuropathy, although the drug has no current specific FDA indication for this use. clearing any trip hazards from your home and taking particular care on uneven ground can all help you avoid falls. Other than this, green tea comes with catechins antioxidants, which help in increasing your metabolism. 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. Charcot affects the bones, joints, and soft tissues of the foot or ankle. Fiber acts as a prebiotic, so it helps feed beneficial bacteria in your gut. I dont have swelling in my legs since cutting out dairy, I dont have pain anymore, I have more energy and I just feel so much better in general. 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. Download it here: Dear-Medical-Professional.pdf. 2. These theoretical and laboratory tests must be weighed against your current hot flashes and related symptoms. This site is strictly a news and information website about the disease. It is tough trying to be vegan and then being told that you need milk and eggs to get/ strong. 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