Phone: 1-800-936-1363. There is no listed contraindication to the use of alendronate (Fosamax) in patients with CMT. These include plant- and meat-based proteins like: Canned tuna (packed in water) Cottage cheese (low-fat) Eggs (not fried) Fish (skinless) Hummus Peanut butter powder Pork (lean and trimmed) Poultry (without skin) Seitan Tofu Yogurt (plain) Refined grains that are suitable for UC flare-ups include: Cornflakes Cream of wheat Farina Grits Melba toast Foods to Avoid on Chemo. Not knowing allowed me to live life as I wanted and never stopped me. I went to PT for 6 months. The new and promising drug Avastin (bevacizumab) is not known to cause or worsen neuropathy, but the drug has not been in use very long. 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 next day I felt horrible and my legs were so weak I thought they were going to collapse under me. We know that Charcot Marie Tooth patients often have fatigue and weak muscles, both of which prevent them to stay active and in turn they suffer from weight gain. Required fields are marked *. 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. It has many uses including blood pressure control, heart disease, migraine prevention, and suppressing essential tremors. Usually this implies that the underlying infection is more severe or more difficult to eliminate. My eating habits are bad. CMT starts in infancy and lays dormant in the body until one day the symptoms start to appear. If you feel you may not be meeting all of your vitamin and mineral requirements, a daily multivitamin is the best bang for your buck and will provide all the vitamins and minerals you need without excess. My feet wake me up. 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. A good occupational therapist may recommend some tools to facilitate hand and finger use. Ive noticed the past three weeks Ive been dropping several items that I grab ahold of..its pretty scary. It turns out that Popeye has been right all along! The painful reaction experienced is a very unusual reaction to amitriptyline (Elavil). Add possible constipation to the many reasons a sweet dessert should be an occasional, not regular, thing. Your son has two diseases that independently affect the peripheral nerves and in combination can aggravate the nerve damage. has been associated with respiratory depression and respiratory arrest. Please make sure you JOIN the Global Registry for Inherited Neuropathies (GRIN). The statins are on the CMTAs drug list, but I think that people with CMT and high cholesterol would be negatively affected by avoiding Lipitor or other statins if they truly need them. Diagnosed in early 20s. Try eating a diet rich in healthy fats and fiber. Fiber acts as a prebiotic, so it helps feed beneficial bacteria in your gut. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. 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. Paramount+ is . If you have questions about alcohol and your health, consult your physician. There are many ways to give. The program offers adaptive free online classes for everyone! Focusing on a varied diet with adequate carbohydrates and a wide variety of fruits and vegetables will likely meet all of your micronutrient needs. But fruited yogurt is another story. September 24, 2019. They helped me. Low impact, moderate exercise is very helpful. Suite 700 There is no evidence that injections will worsen the overall condition. Whooping cough vaccine is part of the dPT or dP routine vaccination. Be good to yourself and try not to stress. Therapeutic Research In Accelerated Discovery TRIAD = Academia + Government + Industry. Charcot-Marie-Tooth Association Eating certain healthy foods following exercise may help boost this recovery time, enabling patients to get started again faster. Learn about how to identify your trigger foods: The related drug lansoprazole was reported in 2005 to cause neuropathy in one patient. Zetia can cause toxicity to the liver, especially in patients that already have liver problems, such as chronic hepatitis C. An internist or gastroenterologist would be better to consult about these hepatic (liver) issues. Diet, however, is going to have the highest impact on weight loss. However, they also are high-purine foods. I eat a lot of fruit juices sugar in it. 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 I dont have a recipe. This small risk should be weighed against the potential benefits of additional chemotherapy. aged 9 yrs and had many more my last one being 4 weeks ago. The benefit to patients with normal vitamin levels and function has not been established. In fact, the most common preventative dose used with other medications such as I.N.H. There is no information about a positive or negative reaction from a patient with CMT with any of these treatments. Only. At this point, there is no diet that has been proven to show improvement in CMT symptoms or disease process. "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? Most people with this risk take daily folic acid supplements and this formulation appears to be an attempt to supply a more complete but unproven formulation. There is no mention of whether any CMT patients were included in this large trial. The effects are uncommon and directed directly against muscle and not on the nerve or worsening of CMT. A mega dose is defined as 10 times the RDA (recommended daily allowance). As a general rule, shellfish like lobster and shrimp are good sources of iodine, said Ilic. This article does not provide medical advice. This could include replacing processed-flour goods with unprocessed grain products, such as bread, pasta, and rice. And I prefer vanilla coconut milk regular milk is too thick. Would like some help from others relating to my problem with C.M.T , food advice to diminish the pain. Clams. 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. However, everyone has unique diet needs related to energy levels, weight maintenance, etc. The top food sources of B vitamins are leafy greens, salmon, eggs (with yolk), shellfish, poultry, beef, fortified whole grains and sunflower seeds. So when you finish your walk around the block, trade out the iceberg lettuce in your evening salad for some spinach and give your muscles a helping hand. The statin drugs are safe for most patients with CMT. it usually includes some muscle strengthening as well as aerobic exercises to get the heart rate up. info@cmtausa.org If you have a tough day, making small progress and steps forward is always better than staying off track. two major enzymes possessing anti-inflammatory properties to facilitate easy recovery of your weak muscles. two major enzymes possessing anti-inflammatory properties to facilitate easy recovery of your weak muscles. It is a possible medical side effect that is unrelated to CMT. However, deep venous thromboembolism (DVT) is one rare but potential side effect of the treatment. Others in this class of drugs, termed TNF-alpha blockers, but not this particular agent, have very rarely been associated with triggering other autoimmune disorders, including demyelinating neuropathy in a handful of instances. This includes straining of the weak joints and muscles while making the body movement difficult leading to further weight gain. Pastries, cookies, and other treats with refined sugar are low in fiber . Just 3 ounces of shrimp (about 4 or 5 pieces) contains approximately 10% of your . mashed.com - Jennifer Goldsmith. You mentioned fluoride? This morning I woke up. I think what helps me that this cmt2 is so slow advancing in my case. If your patient has another form of CMT, then the case is reportable. One slice contains 27 calories, 0 grams of fat, and 7 grams of carbs. I am not aware of any problem with Propofol as an anesthetic in CMT patients. Right now, I am doing the diet at 100% for the next 100 days. Antimuscarinic medications such as Vesicare are not known to cause or worsen neuropathy. After working for a few years in finance, Lee decided to shift his attention toward writing and library studies. 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. The issue is complex because CMT, kidney failure and diabetes can each cause neuropathy. Eatingsmaller meals with regular healthy snacks in between, rather than large meals, can alsohelp reduce fatigue. What can I do to alliviate the pain. 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. CMT patients are, therefore, confronted with a cost-benefit analysisthe feeling of well-being associated with these medications versus the fear of falling down and injuring themselves. Most toxic exposures are from much higher dosages, mostly of 250 mg or more a day. Its terrible! Additionally, taking megadoses of any substances is not advisable. HNF is a 501(c) 3 public charity enabling donors to support our mission safely. Email: [emailprotected] Proposed list of medications of concern to patients with CMT Definite high risk (including asymptomatic CMT) Vinca alkaloids (vincristine) Moderate to significant risk Amiodarone Bortezomib (velcade) Cisplatin, carboplatin, oxaliplatin Colchicine (extended use) Dapsone Didanosine (ddI) Dichloroacetate Disulfiram Gold salts Leflunomide 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 am over fifty, and feel very down at times. We recommend a heart-healthy version of scrambled eggs 1 whole egg and 1 egg white, scrambled together with oz of lowfat cheese. The numbers in the parentheses (1, 2, 3) are clickable links to peer-reviewed scientific papers. Protein is necessary but shouldnt be consumed excessively, as this can lead to weight gain. Other types of neuropathy, especially from diabetes, often impair autonomic nerve fibers and these types of drugs can cause an exaggeration of some expected and predictable side effects such as dry eyes and mouth; however, most CMT patients have minimal or no autonomic impairment and they should not have concerns any different from any other patient without CMT. That is absolutely the best starting point. I have been vegan almost 3 years. Male and female steroids (hormones) of various types appear to affect a variety of normal nerve and muscle functions. Courtney. Taking downtime and implementing ways to destress is crucial to prevent stress neurotransmitters . Anyone who notices a significant decline in strength after taking Ambien should consult his or her physician. My hip hurts a lot when I walk. Foods to avoid with cmt Information about diseasemaps.org by users and is not medical advice. If there is any deterioration of your CMT, you should be evaluated immediately, but I would not expect that to happen and believe you should take the advice of your doctor. La plus grosse communaut franaise base sur la rplique en tous genres, (chaussures, vtements It is associated with causing and worsening neuropathy, especially if taken on an ongoing basis; however, the nerves that control respiration are not usually involved especially if the nerves to the limbs are not similarly affected. Have you checked out Dr. Terry Wahl's protocol? Care should be taken if there are any allergies to eggs or soy, as these are often sources of lecithin supplements. The most common are dizziness, lightheadedness, weakness, headache, stomach upsets, sleep disturbances, and anxiety. Some snack foods and store-bought packaged toddler foods are high in salt. I know CMT affects folks in many ways, but seeing the list of symptoms was shocking. info@cmtausa.org 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. 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. Children younger than 24 months old should avoid added sugars. There were a few reports of sudden neuropathy with St. Johns Wort in the late 90s, but very little since then. Neither the meningococcal or current flu vaccines are specifically associated with neuropathy but the flu vaccine is different every year. If you have Charcot-Marie-Tooth syndrome, moderate exercise is usually best, especially when combined with a healthy diet. 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. It can decrease appetite and lead to weight loss. Most CMT patients will not have a reaction other than the kind that might be expected in anyone. I am 43 years old and have CMT. Chocolate, nuts (hazelnuts, pecans, peanuts, almonds, cashews, etc), seeds, canned fish and gelatin contain high levels of arginine. Enjoy! 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. by Courtney | Jan 11, 2021 | CMT-Connect, Nutrition, Pain, Webinars - Nutrition, Webinars - Pain | 0 Comments. French fries can also cause obesity. My name is Samantha. Milk, Hi Why should you join GRIN?Its pretty simpleWe need YOU! Wash your hands for at least 20 seconds with soap and warm or cold water before, during, and after preparing food and before eating. Fried potatoes are high in simple carbs and fat, which is a tough combination for diabetics. Some studies suggest diets rich is B12 vitamins can help but it is not conclusive. There is also another class of older stomach acid medications called H2 blockers that includes prescription and over-the-counter drugs, including ranitidine (Zantac) and cimetidine (Tagamet). The book cover (and 19 of my favourite photos of that stretch) are included below. Also had extensive neck and back surgery as well as knee replacement. The main benefit is for patients with deficient or low vitamin levels. >While Zostavax, intended for adults over 60, has been approved by the FDA, there is still somewhat limited experience with it. Helpful patient care resources for the treatment & management of CMT. by Brielle Gregory Updated: Dec 22, 2021. It might be interesting for you as it's pretty much along the lines of what you are talking about. I have not checked with my doctor before starting the diet I did the experimentation myself. Gravy and meat sauces. This is an emerging and exciting new class of drugs used to treat several autoimmune diseases. Garlic and Root Vegetables Garlic, onions, ginger and turmeric have anti-inflammatory properties. Duloxetine is an anti-depressant and not a benzodiazepine, but the drug has been studied to treat anxiety as well. 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. The other day. Charcot-Marie-Tooth disease (CMT) is one of the most common inherited nerve disorders. My go-to breakfast for the past week: chia seeds, coconut milk, pineapple, blueberries, toasted walnuts, and honey. 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