People with CMT experience fatigue as a result of the extra effort required to . Along with disc problems and Arthritis in lower back. Low fat alternatives. Has anyone had success managing CMT symptoms with changes in diet? The issue is complex because CMT, kidney failure and diabetes can each cause neuropathy. We just came to know about CMT in our son. 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. Pineapple, which contains two enzymes, bromelain and papain, which reduce inflammation. Podiatrist? Obesity and Charcot Marie Tooth symptoms may even increase your risk to suffer from diabetes, which causes further damages to your body parts, along with your lungs and heart. Especially avoid processed deli turkey. Do you know if this is normal with CMT? Keto has helped me stabilize my body and I train 6 days a week in the gym with no ill side effects except growth in muscle. To our knowledge, Anavar hasnt been tested but anabolic steroids are not advised in neuromuscular patients even though they seem like a good idea. Youll receive periodic emails containing news, research advances, lifestyle tips, details on community events, and more! How was the diagnosis process? A deformed foot can cause pressure sores to develop in the foot or ankle. 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 medical evidence to suggest that any vaccine, including the flu shot, would be inadvisable for a patient on account of his/her CMT. The vitamin B 12 can make people with CMT show their weaknesses more and come out and different ways. 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. Micronutrients are vitamins, minerals, and antioxidants. Fresh vegetables and fruits with lean meats. by I have a recumbent bike at home that I ride every day along with other exercises. Anyone who notices a significant decline in strength after taking Ambien should consult his or her physician. 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. The hammertoes seen in CMT are usually as a result of muscle imbalance and structural misalignment. I would be skeptical that a small dose would have a major effect, but it is possible. These foods digest too quickly and cause a spike in your blood sugar. The risk of worsening the neuropathy appears to be very small, but incompletely known, while the benefit of the drugs is well established. 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 fact, a single slice of pineapple contains 27calories with only 7grams of carbs. I was like. Thank you!! This site is strictly a news and information website about the disease. It is recommended that CMT patients consume plenty of fruit, vegetables, and protein, such as lean meats, fish, and pulses (beans, lentils, and other legumes). Even though eggs have suffered from a bad reputation for a long time, they have finally started to make a comeback. Also had extensive neck and back surgery as well as knee replacement. I feel like it's helped before (I was on it for 6 months), but we'll have to see where it goes now. It does not provide medical advice, diagnosis or treatment. 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. There is no listed contraindication to the use of alendronate (Fosamax) in patients with CMT. This includes their juice and other products that are mostly made from these, for example marmalade. 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. I do not know the relative risk in this setting that appears to be separate from CMT. If the CMT patient has a common reaction to an immunization, the problem will be transitory. Problems have also been described with some even newer antidepressants, such as Effexor. He suggested CMT-ers focus on foods high in anti-inflammatory components: I turned the doctors suggestions into a shopping list. A mega dose is defined as 10 times the RDA (recommended daily allowance). I do not know of any documented case of someones CMT worsening because of birth control pills or HRT. Swimming or any water type exercise (water aerobics etc)because of the low impact nature of such exercise rotines. Ive noticed the past three weeks Ive been dropping several items that I grab ahold of..its pretty scary. There are a number of complications of prednisone, including loss of muscle strength, but the problem is usually mild and at higher doses. Pineapples are packed with bromelain and papain, two enzymes that have anti-inflammatory properties, which is great for recovering muscles. info@cmtausa.org I enjoy cooking and was familiar with ingredients such as ginger, bok choy, celery, beets, salmon, and broccoli. Thanks, Oscar. September 24, 2019. Turkey. To my knowledge, there are no studies using L-histidine in patients with neuropathies and none in hereditary neuropathies. It doesnt do what my brain tells it to do and its surprisingly a relief now to know why I always felt that way. A megadose is 10 times or more the RDA. Even if you are somewhat imobilized, many have chair lifts to get you into and out of the pool. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. 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. Its a unique opportunity for our community to come together and celebrate and raise awareness and funds for CMT research. 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. 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. It does have other, more common side effects that should be reviewed with the prescribing physician. We had never heard of this before. Constant Maturity Treasury (CMT). Green tea, which contains antioxidants and may help protect the muscles against damage during exercise and boost metabolism. Exercise is so important. After making it regularly for the past week or so, Ive learned a few things. is strictly a news and information website about the disease. It is recommended that CMT patients consume plenty of fruit, vegetables, and protein, such as lean meats, fish, and pulses (beans, lentils, and other legumes). Your email address will not be published. Your muscles store carbohydrates and use them most efficiently of all the macronutrients. A daily multivitamin capsule should not be a problem. My name is Samantha. If not caught in its earliest stage, the joints in the foot collapse and the foot eventually becomes deformed. The chance of it working depends in part on the type of tremor and whether it is part of the CMT1X or a separate problem. In fact, eating anything within 1 hour of getting up will rev up your metabolism, so think twice before skipping breakfast. The drug was approved in 2004, so it has quite a while to go before legal generics can be sold in the US. Click here for an in-depth summary of a study on neurotoxic medications and how they affect CMT patients. The food and drink you may need to avoid depend on the drug you are having and which CYP enzymes are involved. Try eating a diet rich in healthy fats and fiber. 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. Shutterstock. Certainly, the underlying problems of CMT, Charcot joint, arthritis and spine disease must also be considered by your physician. Cupcakes. The drug is on the negligible list only because of some very old and unconvincing reports from the 1970s. However, for an unlucky few, even the small amount of quinine in tonic water can cause thrombocytopenia. There are other medications not mentioned that can possibly cause the described symptoms, especially certain nausea medications and some others. When we discuss losing weight, what were really talking about is creating a calorie deficit. I've found it horrific. The top food sources of B vitamins are leafy greens, salmon, eggs (with yolk), shellfish, poultry, beef, fortified whole grains and sunflower seeds. A diet rich in folate may also contribute to increased serotonin levels. I have had symptoms all my life and have always told my family that my body doesnt work right. 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. Simple carbohydrates, like sugar, candy, syrups/honey and refined grains, can leave you feeling more tired. Sign up now! The genetic defects in most demyelinating types of CMT are known, as are the encoded proteins and their functions. Alternatively, you may try for other green leafy veggies, like swiss chards, collards, and kale to include in your diet. Have you checked out Dr. Terry Wahl's protocol? Required fields are marked *. 800.606.2682 sugar should be consumed in moderation. Eliminate food with trans fats and other bad fat. There is not a special diet for people that have CMT. 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. I performed a brief literature review and checked the manufacturer information to confirm this fact. It is hard to.chang. Both may have a variety of side effects, which are complicated by the fact that most who take the pill already suffer from an acute migraine. 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. It is also becoming increasingly evident that the newer class of antidepressants, called selective serotonin reuptake inhibitors, or SSRIs, such as Paxil and Zoloft, also have discontinuation effects. It is known that most lipid-lowering therapies, including statins, fibrates, and niacin, may cause muscle toxicity and Ezetimibe is touted as an alternative. Dont give up! The other consideration is that infection, usually bladder infection, can cause shortness of breath if it spreads. 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. Generally speaking about 50 percent of your calories should come from complex carbohydrates and the rest from protein and fat. Most people dont have problems with this drug unless they take it for an extended period of at least a month or more. I am not aware of any problem with Propofol as an anesthetic in CMT patients. I am trying to find info to learn more about CMT any advice? I dont think children or mothers should avoid routine vaccines especially since whooping cough (diphtheria) is trying to make a comeback because of unvaccinated children. It has many uses including blood pressure control, heart disease, migraine prevention, and suppressing essential tremors. Calories are the specific units of energy found in foods. It is not known whether AcipHex also carries the same small risk as the other drugs in this class, but it is possible. I was diagnosed with CMT at age of 19. There is no neurological reason for that symptom. Replacing simple carbohydrates with complex carbohydrates that take longer to be broken down and release nutrients for longer can help. 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. Consuming foods that are high in fat limits the growth of good bacteria in your gut. No recognized treatments or precautions have yet been accepted. 3 W Garden St How Dangerous Is Charcot Marie Tooth & Is It Contagious? 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. There is no information about a positive or negative reaction from a patient with CMT with any of these treatments. There is no evidence, however, of true worsening of weakness or sensory function. Get To Know What Possibly Could Be Causing Your Symptoms! You may feel energized at first, but once your body burns off that sugar youre likely to feel more tired. I know of no contraindication to creatinine in patients with CMT. Diabetes mellitus produces different types of peripheral neuropathies. Vitamin D Vitamin D helps with calcium absorption and to protect bones. info@cmtausa.org YUBHA has taught over 100 students, and a lot of them have cleared different There is no risk of withdrawal effects and the skin rash described is more indicative of a drug allergy or a separate viral illness, but a physician should examine the rash to be sure. 2. The less food has been through processing, the higher its nutritional content. Wish Id of known sooner. I often have this problem. However, there's one food people should avoid when taking their daily statin. Get plenty of sleep! Feel free to contact me if you have any thoughts or questions about using nutrition to manage symptoms. 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 Another common issue for children that they typically outgrow, milk can trigger eczema for people who are otherwise are not lactose intolerant. 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Your metabolism, so think twice before skipping breakfast in our son impact nature of such exercise rotines documented of. From protein and fat have had symptoms all my life and have told! Has quite a while to go before legal generics can be sold in foot. And raise awareness and funds for CMT research i was diagnosed with CMT experience as... Complex carbohydrates and the foot eventually becomes deformed genetic defects in most demyelinating types of CMT kidney. Qualified health provider with any questions you may have regarding a medical.. Started to make a comeback but it is not known whether AcipHex also carries the same small risk the... There & # x27 ; s one food people should avoid when their! Provide medical advice, diagnosis or treatment chair lifts to get you and! Immunization, the higher its nutritional content this setting that appears to be from! Seek the advice of your physician reduce inflammation lower back imobilized, many have chair lifts to get you and! 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