Neither do I believe that there is any theoretical reason why this should make a neuropathy worse. Midazolam (Versed) is a medication used to assist in the sedation, reduction in anxiety, and impairment of memory in patients undergoing procedures (including endoscopies). Hi Other than the food items, the medium of cooking like oils can also contain large quantities of Vitamin K like the Canola . Prilosec has been reported to cause neuropathy and/or myopathy (muscle disease) in a very small number of patientsnot enough to know if the effect is real or not. I have found no other similar reports of this kind in a review of the North American CMT database registry. Description of the most prevalent types of CMT. The neurotoxic drug list was compiled by neurologists and is continually monitored for additions and corrections. A good occupational therapist may recommend some tools to facilitate hand and finger use. 25 Foods You May Want to Avoid, According to Registered Dietitians. Cupcakes. 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. Exercise can be difficult to sustain with CMT, as the muscles and joints are weakened and take longer to recover following exercise. I am 5' 1" weighing 155 lbs. "Choosing foods that keep your blood sugar in a safer range, as well as avoiding the ones that don't, helps reduce your risk of your condition progressing and developing complications." So which foods are fine to eat freely, and which should you avoid? Problems have also been described with some even newer antidepressants, such as Effexor. It has not been associated with worsening CMT neuropathy. Each case should be considered separately and the appropriate cholesterol lowering agents recommended, but the effect on CMT is only one factor to consider. Nitrofurantoin (Macrodantin) is an antibiotic used for a variety of problems, but more extensively in past decades for UTIs. This is one of the most common things Ive heard from patients and clients in recent months. HNF Board of Directors, Staff and the TRIAD Council. 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. Antimuscarinic medications such as Vesicare are not known to cause or worsen neuropathy. These include most breads, crackers, pasta and breakfast cereals. 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. I had my first op on my feet Paramount+ is . 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. I try to eat fewer calories and, for environmental and health reasons, Ive started to limit my consumption of red meat. My go-to breakfast for the past week: chia seeds, coconut milk, pineapple, blueberries, toasted walnuts, and honey. Those, he said, can make CMT symptoms worse. Drowsiness is also common. Taking downtime and implementing ways to destress is crucial to prevent stress neurotransmitters . You should reduce your caffeine and alcohol intake to improve the quality of your sleep and in turn, reduce tiredness and fatigue. pineapples: pineapples come with papain and bromelain, i.e. Very efficiently written story. 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. 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. X-linked type CMT 2 is an unusual form; CNS demyelination is also seen, but is unusual as well. In fact, the most common preventative dose used with other medications such as I.N.H. So, the risk for two weeks of treatment is minimal, but some concern is called for if the treatment extends more than a month. Only a few antibiotics are known to be of higher risk to CMT patients than others, so I would need to know the specific antibiotic to answer fully. , and my social media feeds have been flooded with inspirational quotes and infographics related to Charcot-Marie-Tooth (CMT). Vincristine in particular is an exceptionally high risk for CMT1A patients and can result in severe, irreversible neuropathy after one or two standard doses. Im 67 and was just diagnosed with CMT. In this environment you can safely exercise all the muscles in your body using resistance of the water. 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). The vitamin B 12 can make people with CMT show their weaknesses more and come out and different ways. A megadose is 10 times or more the RDA. 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 is characterized by inherited neuropathies without known metabolic derangements. 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. 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. One slice contains 27 calories, 0 grams of fat, and 7 grams of carbs. The risk for migraine Botox in CMT is minimal. I was like. Fats and Oils: Limit saturated fats and refined vegetables oils. The vitamins included are folate, vitamin B6 and vitamin B12, which qualifies the pill as a food supplement and not a drug. I am attaching a copy of the link to my Facebook page. Our doctors do not encourage their use. Pastries, cookies, and other treats with refined sugar are low in fiber . Limit buying foods that are high in sodium, fat, sugar, or starch content. Midazolam has a black box warning stating: Midazolam I.V. But my weight is out of control. But, Govindarajan said at the CMTA conference, the typical American diet encourages inflammation with calorically dense foods and an abundance of sugar and carbohydrates. In fact, eating anything within 1 hour of getting up will rev up your metabolism, so think twice before skipping breakfast. Yes! [ 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 . Good: Shellfish. Progesterone is involved with nerve function and one progesterone blocker (onapristone) is a source of interest for a treatment trial because of its beneficial effects on a rat model of CMT1A, but the issue is far from settled. >Lupron is not associated with worsening CMT or causing neuropathy, but what happens when sex hormones are altered in people who have disorders with muscle weakness, including CMT, is a very active area of current research. Take 5,000 IU vitamin D3 daily or get ample sun. But fruited yogurt is another story. One should avoid megadoses of B6 (10 times the RDA), which presents a danger only when taken in excess of the supplemental. That is hard to say. PINEAPPLE Who knew that something so delicious would also help with muscle recovery? 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. Male and female steroids (hormones) of various types appear to affect a variety of normal nerve and muscle functions. 7. Nitrous oxide or laughing gas is on our neurotoxic drug list, but this is only considered toxic if the person abuses the drug or has a vitamin B deficiency. Taking too much B6 is bad. cut down on sweets, candies, chocolates, soft drinks, fruit juices, biscuits. However, there are other unrelated risks that the patient should discuss with the prescribing MD. They helped me. Minds constantly cloudy and the neuropathy is insane. Weight gain can be a serious issue in CMT, as weakened muscles and fatigue can make it difficult for patients to keep active. [ 2 ] 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. The muscle weakness that they can cause is not an issue for most of the people who take them. I use an elliptical since I cannot run, I also use kettle bells and body weight to keep off the extra weight right now Im stuck fighting to loose at least 50 pounds, Keep up the good work. A simple google search would of told you this. 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. PO Box 105 Other than B6, the B vitamins have no known risk. Yeah, dont believe the lies. But. Gravy and meat sauces. The short answer is there is no one-size fits all. Now there is! Supporting patients and families with critical information to improve quality of life, and funding research that will lead to treatments and cures. However, if the CMT patient has chronic inflammatory neuropathy as well as CMT, the patient could be left with a loss of motor and sensory function. What is Charcot Marie Tooth (CMT)? I would theorize that CMT would enhance this effect but I am not aware of any association between the two. Enjoy it. 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. CMTA-STAR Research for Axonal Forms of CMT, CMTA-STAR Research for Demyelinating Forms of CMT, Research in CharcotMarieTooth Disease Type 1A (CMT1A), A Guide to Physical and Occupational Therapy for CMT, CharcotMarieTooth Disease and Breathing Problems, Exercise and Physical Therapy for Inherited Neuropathies, Physical Therapy and Exercise: Getting the Right Dose, GoGo Stik Makes Scooping Dog Poop Easy and Safe, Breakthrough Guide to Orthopedic Surgery for CMT, How to Decide If Foot Surgery Is Right for You, Surgical Correction of the CMT Foot, Part 2: Tendon Transfers, Click here for an in-depth summary of a study on neurotoxic medications, Taxols (paclitaxel, docetaxel, cabazitaxel), Metronidazole/Misonidazole (extended use), Nitrofurantoin (Macrodantin, Furadantin, Macrobid), Nitrous oxide (inhalation abuse or Vitamin B12 deficiency), Pyridoxine (Although megadoses [10 times or more the RDA] of Vitamin B6 may be harmful, high intakes of vitamin B6 from food sources have not been reported to cause adverse effects.) 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. 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 performed a brief literature review and checked the manufacturer information to confirm this fact. This includes straining of the weak joints and muscles while making the body movement difficult leading to further weight gain. Charcot-Marie-Tooth disease (CMT) is one of the most common inherited nerve disorders. If your patient has another form of CMT, then the case is reportable. Simple carbohydrates, like sugar, candy, syrups/honey and refined grains, can leave you feeling more tired. , MD, a neuromuscular physician at the University of Missouri, said at the conference that although he works at a. many factors outside the clinic affect how well a person lives with CMT. Unfortunately, none of these medications work all the time for all patients; some work for some patients, others work for other patients. 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. So, most people can use tonic water occasionally and in moderation as a remedy for leg nocturnal cramps. However, the drug appears to be intolerable to this patient and probably best avoided. 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. Focusing on a varied diet with adequate carbohydrates and a wide variety of fruits and vegetables will likely meet all of your micronutrient needs. Given the health benefits of reducing high cholesterol levels, and the rarity of these (and other) side effects, statins remain the drugs of choice for treating high cholesterol levels. I know CMT affects folks in many ways, but seeing the list of symptoms was shocking. A recent study found that a compound in spinach increase protein synthesis, which helps your muscles repair faster after you work out. Everyone responds differently. There is no information about a positive or negative reaction from a patient with CMT with any of these treatments. This site is strictly a news and information website about the disease. My name is Samantha. There are some possible beneficial effects of some other hormone blockers, especially progesterone blockers, in animal models of CMT1 and this question is an active line of research, but the effects from Arimidex are likely to be clinically insignificant; the drug has demonstrated benefits in the proper breast cancer setting. I was pretty active as well, over the years though as I have gotten older and as my activity level has decreased due . Cameron Whitman/Stocksy United. In addition to complex carbohydrates, micronutrients play an important role in providing your body with usable energy from food. The damage caused by the disease leads to sensation loss and muscular weakness, along with other similar types of symptoms.(1). Inflammation is an immune response to damage that can cause heat and swelling in the muscles following exercise and can slow down muscle repair. I am not aware of any problem with Propofol as an anesthetic in CMT patients. The desirable way to consume sugar is through diet as it occurs naturally in fruits, vegetables, dry fruit, milk/milk product. Some medications have so-called black box warnings, meaning that past experiences dictate caution in their use because of significant adverse reactions. Ultimate wishlist of CMT-friendly products on Amazon to make life with CMT easier. Losing weight with CMT. green leafy vegetables, such as spinach, kale, and collards. Worst mistake of my life was going vegan with CMT. 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. This new round of concern is based on a single large study in Denmark that found that people who had neuropathy with no known cause were more likely to be taking a statin. According to our CMT experts, Botox is not recommended for individuals with CMT but can be used in areas that are not directly affected by CMT (the face, for example). I know of no contraindication to creatinine in patients with CMT. However, at the present time there is no effective treatment to stop or slow down the progression of the disease and we do not yet know how to regulate or replace the myelin proteins. Eliminate food with trans fats and other bad fat. Try eating a diet rich in healthy fats and fiber. 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. Plants are not our friends. We follow a strict editorial policy and we have a zero-tolerance policy regarding any level of plagiarism. 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. Pensacola, FL 32502 Along with disc problems and Arthritis in lower back. Foods to Eat and Avoid When You Have an Ulcer Choose These Foods Fruits Vegetables Legumes Lean meats like skinless poultry and lean beef Fish and seafood Eggs Whole soy foods like tofu or tempeh Fermented dairy foods like kefir or yogurt Healthy fats like olive oil, avocados, and nuts Whole and cracked grains Green tea All of the data that Im aware of is from laboratory cultures or rat nerves and models, not humans. You may feel energized at first, but once your body burns off that sugar youre likely to feel more tired. It does not provide medical advice, diagnosis or treatment. Actually, they might be right. Be good to yourself and try not to stress. Start a CMT Birthday Fundraiser! Pineapples are packed with bromelain and papain, two enzymes that have anti-inflammatory properties, which is great for recovering muscles. Additionally, taking megadoses of any substances is not advisable. The degree of interference with your normal life and duties are important considerations. by it usually includes some muscle strengthening as well as aerobic exercises to get the heart rate up. mashed.com - Jennifer Goldsmith. Your son has two diseases that independently affect the peripheral nerves and in combination can aggravate the nerve damage. Helpful patient care resources for the treatment & management of CMT. 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. Only. I do not know of any documented case of someones CMT worsening because of birth control pills or HRT. I did quite well with it when I was younger.I danced a lot and active with my 2 kids in my early and mid 20s. However, they also are high-purine foods. But foods that are high in B 12 should be avoided mostly. According to a recent study profiled in Mens Health, people who drank three cups of green tea a day had fewer markers of cell damage caused by resistance to exercise. The cardiologist should be aware of any EKG changes. Foods that contain a high amount of salt can reduce the function of the digestive system, thereby making bowel movements sorer. I think what helps me that this cmt2 is so slow advancing in my case. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. Anti-inflammatory foods. 3 W Garden St Vinblastine is closely related to vincristine. Therapeutic Research In Accelerated Discovery TRIAD = Academia + Government + Industry. Anticonvulsants (some of which have been noted to have mood-altering effects) such as tiagabine (Gabitril) are notorious for side effects like dizziness and drowsiness. By investing in the CMTAs Legacy Society, you can ensure that children with CMT will grow up with the hope of a world without CMT. Just "OWN" It - Build Your Own Fundraiser! Take multivitamin, alpha-lipoic acid and co-enzyme Q10 daily. How was the diagnosis process? CMTA-STAR Research for Axonal Forms of CMT, CMTA-STAR Research for Demyelinating Forms of CMT, Research in CharcotMarieTooth Disease Type 1A (CMT1A), Ask the Expert: Braces, Orthotics, and Footwear, Disability for CMT Peripheral Neuropathy: VA & Social Security, Find the Right Lab for Your Genetic Testing, Medications for CMT Peripheral Neuropathy. 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. Eatingsmaller meals with regular healthy snacks in between, rather than large meals, can alsohelp reduce fatigue. Low fat alternatives. I dont have a recipe. The next day I felt horrible and my legs were so weak I thought they were going to collapse under me. Avoid foods that contain chilies, cayenne pepper, pepperoni pizza, and fast foods. We recommend a heart-healthy version of scrambled eggs 1 whole egg and 1 egg white, scrambled together with oz of lowfat cheese. I have no energy and stay sleepy sugar should be consumed in moderation. We rely on your donations as we advance our mission to deliver results to our CMT family community. Also eliminate cakes, pies, doughnuts, cookies, croissants, muffins and all pastries and snack foods such as chips, most snack mixes and buttered popcorn. The drug does have a variety of side effects and unusual complications that should be considered before use or withdrawal of use. It is difficult to sort out which effect is at work in this instance. 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. Care should be taken if there are any allergies to eggs or soy, as these are often sources of lecithin supplements. "CMT examination is a piece of cake." That's what one of our students said. That said, it is most likely going to take even longer because weight loss is inherently more difficult than weight gain. Constant Maturity Treasury (CMT). I was born with CMT and have been struggling with my weight for the last 8 years or so. I have had symptoms all my life and have always told my family that my body doesnt work right. 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. At my age now, I have develop osteoarthritis, 2 right hip replacements, and last few years the neuropathy in my feet is unbearable. If you have a tough day, making small progress and steps forward is always better than staying off track. It turns out that Popeye has been right all along! Anyone who notices a significant decline in strength after taking Ambien should consult his or her physician. 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. Others used for viral infections (HIV agents, wart virus) fungal infections (griseofulvin), and parasitic infections (malaria) are usually considered separately. There are other common side effects attributable to predictable blocking of autonomic nerve signals that cause dry eyes and mouth and bladder complaints; increased pain and weakness are not typical side effects. Had symptoms all of my life. No, but it is advisable to eat healthily and avoid excessive weight gain. If they appear to worsen after starting a statin, the issue should be addressed with their physician. Because a person with CMT cant exercise as hard as someone without CMT, it is important to watch your diet. 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. 3 W Garden St Enjoy! However, this does vary from person to person and you may need to experiment with your own diet to find out the best amount of carbohydrates for you. My eating habits are bad. I enjoy the deep water exercises because my feet dont touch the bottom and I love being suspended in the water. Her symptoms dissipated in four months. Salmon. You will live a long life. 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. two major enzymes possessing anti-inflammatory properties to facilitate easy recovery of your weak muscles. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. I'm praying it works to soften the nerve pain in my feet and hands and hopefully also to lessen to fine motor coordination that I am losing in my hands. Try a modified keto diet! A recent in-depth literature review found no cases going back to 1963 that described any effects, positive or negative, of Adriamycin in a CMT patient. If you have Charcot-Marie-Tooth syndrome, moderate exercise is usually best, especially when combined with a healthy diet. French fries and potato chips. The bottom line is to adjust your expectations and try to exercise patience during the process. Get To Know What Possibly Could Be Causing Your Symptoms! Just like most of the foods on this list, the issue is with the proteins found in milk. I use one part chia seeds to a little more than four parts liquid. 11K subscribers in the FrenchyReps community. 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. 2. Im going carnivore as theres many in CMT groups who tried it and are improving. The first is tacrolimus (FK-506, ProGraf), which rarely causes a neuropathy with demyelinating features, probably by triggering an immune reaction. 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. The consumption of foods that have excess salt can leave your body grasping for water and this can add to the pressure . Subjects who received the vaccine were half as likely to get shingles (herpes zoster) and much less likely to develop postherpetic neuralgia (PHN), the painful form of neuropathy limited to the region of the shingles. Most associations have not been proved after larger scrutiny. Charcot Marie Tooth is a type of inherited and progressive disorder, which characterizes damages to the patients peripheral nerves. 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. Steroids have not shown to be effective in strengthening muscles affected by CMT. I noticed a decline in the last few years, but I attributed everything to the aging process. Good luck fellow CMT sufferers. WE ARE THE DRIVING FORCE BEHIND CMT RESEARCH FOR A CURE. Avoiding these foods will help to take the load off a slow COMT gene. The effect is likely magnified with already weak or inactive muscles. 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. This can include removing skin and excess fat from meat, opting for reduced-fat alternatives, and avoiding fried foods or consuming ready meals. Reducing alcohol and caffeine intake can improve sleep quality and reduce fatigue. Rash, however, is a potential complication of any medication. As a child and young adult I had a high metabolism and never had to worry about my weight (even with my disability). The mechanism in each of these substances is different and in some of them, the exact mechanism is unknown. 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