Barley. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Her symptoms dissipated in four months. 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. We need YOU! http://www.angelfire.com/mi2/chip/cmt.html. He also needs the advice of a neurologist regarding the CMT. Most seem to carry similar risk to others with neuropathy from other causesdiabetes, etc. Click here for an in-depth summary of a study on neurotoxic medications and how they affect CMT patients. The more severe the neuropathy, the more susceptible the patient to the exposure of the neurotoxin. Does anyone have great recipes that use turmeric? Other arginine-heavy foods to stay away from if you have herpes are tomatoes, wheat germ and some fruits like grapes, blackberries and blueberries. The drug is also under investigation for supporting nerve growth. French fries and potato chips are often very high in calories and . 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. The genetic defects in most demyelinating types of CMT are known, as are the encoded proteins and their functions. by Neither do I believe that there is any theoretical reason why this should make a neuropathy worse. 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. Try a modified keto diet! Reglan is associated with other neurological side effects, most commonly movement disorders, which are usually recognizable by treating physicians. Donate While You Shop & Support CMT Awareness! Alternatively, you may try for other green leafy veggies, like swiss chards, collards, and kale to include in your diet. There are no reported contraindications for persons with peripheral neuropathies taking these over-the-counter drugs. You may feel energized at first, but once your body burns off that sugar youre likely to feel more tired. Everything you put into your body needs to do double duty, whether it is increasing metabolism, lowering cholesterol, or helping your muscles recover faster after a workout. Would like some help from others relating to my problem with C.M.T , food advice to diminish the pain. I went to PT for 6 months. And I prefer vanilla coconut milk regular milk is too thick. HNF is a 501(c) 3 public charity enabling donors to support our mission safely. Neurontin is one of a group of medications that are used to treat painful peripheral neuropathies. Is there anything to be done to lessen the neuropathy in my feet and legs, or how to change my diet to help. The drug, however, is associated with other direct lung (pulmonary) toxicity of differing types and is more than likely the cause of your problem. There is no known direct effect of Evista on CMT patients or peripheral neuropathy. Very efficiently written story. 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). Discovered in 1886 by three physicians, Jean-Martin Charcot, Pierre Marie, and Howard Henry Tooth, CMT affects an estimated 2.6 million people. When I sleep. My eating habits are bad. The CMTA is a 501(C)(3) nonprofit organization, EIN# 22-2480896. The best possible diet you can be on to manage your CMT symptoms is one that is nutritionally balanced in a way that your muscles receive all the necessary macro and micro-nutrients to optimize their function. One such example is choosing low fat instead of full fat yogurt. PINEAPPLE Who knew that something so delicious would also help with muscle recovery? It appears that everyone who developed PHN actually had true shingles, despite the vaccine and not because of a vaccine reaction. Take 5,000 IU vitamin D3 daily or get ample sun. Oysters. 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. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. WE ARE THE DRIVING FORCE BEHIND CMT RESEARCH FOR A CURE. Im 63 years old. Consuming foods that are high in fat limits the growth of good bacteria in your gut. This is a complex situation. The two used for bacterial infections with the most convincing link to neuropathy are metronidazole (Flagyl) and nitrofurantoin (Macrodantin, Furadantin, Macrobid). There is no known effect on CMT or neuropathy from Arimidex or similar breast cancer hormone treatments. I have not checked with my doctor before starting the diet I did the experimentation myself. As far as we know, there should not be any neuropathy concerns with this medication. Its terrible! Take multivitamin, alpha-lipoic acid and co-enzyme Q10 daily. info@cmtausa.org Ive been trying to go vegan. 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. The symptoms described are well known and common side effects. There is not a special diet for people that have CMT. Get plenty of sleep! I am 66 yrs. Read about CMT updates and the latest in CMT research. Our articles are resourced from reputable online pages. The effect is likely magnified with already weak or inactive muscles. Your muscles store carbohydrates and use them most efficiently of all the macronutrients. I know of no contraindication to creatinine in patients with CMT. The treatment is rarely associated with certain eye and retinal problems that are not at issue in the most common forms of CMT. His 2020 illness is no secret that millions of people are fighting their weight. The vitamin B 12 can make people with CMT show their weaknesses more and come out and different ways. Make a donation to the Hereditary Neuropathy Foundation to help find treatments and cures for those living with Charcot-Marie-Tooth and Inherited Neuropathies. We recommend a heart-healthy version of scrambled eggs 1 whole egg and 1 egg white, scrambled together with oz of lowfat cheese. My name is Samantha. Having a neuromuscular disorder like Charcot-Marie-Marie-Tooth syndrome can pose some unique challenges of weight loss, especially when designing an exercise and diet routine. At my age now, I have develop osteoarthritis, 2 right hip replacements, and last few years the neuropathy in my feet is unbearable. Choosing a variety of protein sources such as cold-water fish, poultry, grass-fed red meats and beans is important to get a variety of nutrients. He graduated from NC State University in 2013 with degrees in economics and international studies. 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). 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 enjoy the deep water exercises because my feet dont touch the bottom and I love being suspended in the water. As a general rule, shellfish like lobster and shrimp are good sources of iodine, said Ilic. As with any treatment with possible toxicity, the relative risks and benefits need to be weighed. I am 48 years old and have CMT since I was 6 years old. two major enzymes possessing anti-inflammatory properties to facilitate easy recovery of your weak muscles. Lansoprazole and omeprazole are the only two gastric reflux medications on our neurotoxic drug list and they are associated with neuropathy in only a very small number of patients. Thus, to manage your body weight with Charcot Marie Tooth symptoms, you should never forget including spinach in your salad and in turn, give a helping hand to your body muscles. No gluten, no sugar or high fructose corn syrup. 1. The CMTA is a 501(C)(3) nonprofit organization, EIN# 22-2480896. These side effects are also present with conventional antidepressants. Can anyone help me? These foods digest too quickly and cause a spike in your blood sugar. There are many medications that reduce serum cholesterol levels, but the statins are the most effective and most widely used. There is no hard and fast rule that determines extended use, but it is usually many weeks to several months. Any Help for me? The drug does have a variety of side effects and unusual complications that should be considered before use or withdrawal of use. The most important thing is to just keep going, stay consistent and try not to let the slow progress derail you. A good occupational therapist may recommend some tools to facilitate hand and finger use. It is difficult to sort out which effect is at work in this instance. 2. I jumped out of bed. 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 We know very little about special risks for patients with less common forms of the disease. I am 43 years old and 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. This is probably an example where the benefit is great and the risk is small. Decisions about steroid use or dose should be weighed against the expected benefit gained for the arthritis and the severity and type of the arthritis. 6 /8. It may be downloaded here: Full_Medical_Alert_List.pdf, A printable card may be downloaded here: Medical_Alert_Card.pdf. While there are thoughts on how some of these medications work, how Neurontin stops pain is not clear. Participate in an HNF-hosted event or create your own. It does not provide medical advice, diagnosis ortreatment. Indeed, obesity or overweight condition results in additional issues, which make the Charcot Marie Tooth symptoms worse. Exercise can be difficult to sustain with CMT, as the muscles and joints are weakened and take longer to recover following exercise. I am over fifty, and feel very down at times. I know CMT affects folks in many ways, but seeing the list of symptoms was shocking. Please advise for food, medicine, alternative treatments, stemming cell therapy etc. | When we discuss losing weight, what were really talking about is creating a calorie deficit. A megadose is 10 times or more the RDA. Many people take the blood thinner warfarin (Coumadin) for a variety of reasons. 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. In the case of multiple physicians working together, the names of diseases can quickly become long. Most people dont have problems with this drug unless they take it for an extended period of at least a month or more. This adverse effect usually doesnt result in discontinuation of the alendronate. This has proven successful for me personally. mashed.com - Jennifer Goldsmith. There is no known association between biotin and neuropathy. 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. French fries and potato chips. (Photo by Young Lee). Required fields are marked *. However, if you are Vitamin D deficient, discuss supplementation with your doctor. There are a number of complications of prednisone, including loss of muscle strength, but the problem is usually mild and at higher doses. Anyone who notices a significant decline in strength after taking Ambien should consult his or her physician. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. This can include straining weakened muscles and joints further and making it more difficult to move around, resulting in further weight gain. 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. I am attaching a copy of the link to my Facebook page. 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. 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. Diseasemaps 2023, LOOKING FOR PEOPLE WHO LIVE IN PHOENIX ARIZONA. Avoiding these foods will help to take the load off a slow COMT gene. Young Lee The added chocolate helps with muscle recovery by balancing the carbs, protein, and fat. There is no information on whether CMT patients are at more risk than others. The mechanism in each of these substances is different and in some of them, the exact mechanism is unknown. There is some evidence but not a well-accepted belief of mild effects on muscles away from the injection sites. 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. 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. Ezetimibe (Zetia) is the first of a new class of antihyperlipidemic agents, the cholesterol-absorption inhibitors. It turns out that Popeye has been right all along! Foods to avoid during chemotherapy include: 3. 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. Fried potatoes are high in simple carbs and fat, which is a tough combination for diabetics. It is a theoretical issue whether patients with CMT should avoid statins, as there is no evidence that statins worsen existing neuropathy. Pineapples are packed with bromelain and papain, two enzymes that have anti-inflammatory properties, which is great for recovering muscles. This is an emerging and exciting new class of drugs used to treat several autoimmune diseases. Broyhill Leadership Conference 2023 registration is open. Charcot-Marie-Tooth disease (CMT) is one of the most common inherited nerve disorders. This article does not provide medical advice. Red meats, including beef, lamb pork and bacon. Care should be taken if there are any allergies to eggs or soy, as these are often sources of lecithin supplements. She has been to Neurologist, orthopediac surgeon Physio and ot and have some guidance but the disease is progressing more rapidly than they thought. Just "OWN" It - Build Your Own Fundraiser! Being overweight can cause additional issues that can worsen the symptoms of the disease. Fatty fish, such as tuna and salmon, are good sources of omega-3 fatty acids and generally thought of as healthy. Eat it within an hour of getting up and you will jumpstart your metabolism for the day. There is no evidence, however, of true worsening of weakness or sensory function. The Dear Medical Professional Letter has a brief description of Charcot-Marie-Tooth disease and the neurotoxic drug list. Alternatively, you may try for other green leafy veggies, like swiss chards, collards, and kale to include in your diet. Chocolate Milk: Chocolate milk is also one of the excellent health drinks to help Charcot Marie Tooth patients to overcome their weak muscles problems. has been associated with respiratory depression and respiratory arrest. Thrombocytopenia is a drop in the bloods platelet count that can lead to internal and external bleeding as well as a related condition that can cause permanent kidney damage. Please make sure you JOIN the Global Registry for Inherited Neuropathies (GRIN). Milk, Hi 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. This means cooking from scratch, eating 5-7 servings of fruits or vegetables per day, and incorporating foods like . Fill in the required fields to post. The ideal ratio of chia seeds to liquid varies based on personal taste, as does the choice of liquid. Unpasteurized dairy and under-cooked eggs: If it's got a runny yolk, avoid it. Restricting intake of the foods and beverages listed above help some individuals control IC/BPS symptoms. Methadone and Vicoden pills have no such concerns. Keep up the good work i will definitely read more posts. 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. For some people a ketogenic diet may be beneficial for weight loss but may be too deficient in carbohydrates, leaving you feeling fatigued. For those patients, we must be concerned about vaccinations. There is no known link between zolpidem (Ambien) and neuropathy. 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. I think what helps me that this cmt2 is so slow advancing in my case. Nitrofurantoin (Macrodantin) is an antibiotic used for a variety of problems, but more extensively in past decades for UTIs. This article on Epainassist.com has been reviewed by a medical professional, as well as checked for facts, to assure the readers the best possible accuracy. is strictly a news and information website about the disease. 19. Its possible that more local weakness than average will be produced in CMT patients, especially if the injections are in the legs. I also tried making turmeric tonic. Both Adriamycin and high-dose cytarabine carry possible but much less risk than certain agents better known to cause neuropathy such as platins, taxanes, thalidomide, suramin, and Velcade (bortezomib). However, there are other unrelated risks that the patient should discuss with the prescribing MD. One of the challenges facing people with CMT is fact that CMT muscles can take longer to recover from exercise. My hip hurts a lot when I walk. nuts like almonds and walnuts. What exercising can I do I,am weak using cane. Taking antibiotics for a prolonged period sometimes puts one at different risks than the usual five- to 14-day course prescribed for most infections. I use one part chia seeds to a little more than four parts liquid. 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 have a recipe. No, but it is advisable to eat healthily and avoid excessive weight gain. I am aware of only one reference to peripheral nervous system toxicity and topical creams/ointments. It reminded me of one of my takeaways from the. Not knowing allowed me to live life as I wanted and never stopped me. There is some objective evidence that it reduces painful symptoms, but it is not clear if it prevents nerve damage. Fats and Oils: Limit saturated fats and refined vegetables oils. If you have questions about alcohol and your health, consult your physician. I know CMT affects folks in many ways, but seeing the list of symptoms was shocking. How do I find out if I have it also, as my deceased Mother also had some symptoms that we have read about. Your son needs the advice of an internist to keep his diabetes under control. green leafy vegetables, such as spinach, kale, and collards. The only notable interaction is with the treatment and certain HIV-drugs, which I presume are not an issue. Most toxic exposures are from much higher dosages, mostly of 250 mg or more a day. Climbing the stairs is not required. The CMT doctors all agree that it is more important to control high cholesterol than to worry about possible muscle weakness. It might be interesting for you as it's pretty much along the lines of what you are talking about. Wahls protocol is a modified Paleo diet, which may have benefits for some, but again may be too low in carbohydrates for others. Weight gain can be a serious issue in CMT, as weakened muscles and fatigue can make it difficult for patients to keep active. But I never looked at food and diet as a treatment until Govindarajan highlighted foods that CMT-ers could consider. Naratriptan (Amerge) is a commonly prescribed migraine treatment in the triptan class and is similar to Imitrex (sumatriptan). That is hard to say. Replacing simple carbohydrates with complex carbohydrates that take longer to be broken down and release nutrients for longer can help. 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 if you are somewhat imobilized, many have chair lifts to get you into and out of the pool. 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. Steroids have not shown to be effective in strengthening muscles affected by CMT. Phone: 1-800-936-1363. 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. Is there anyone with C.M.T that lives in or near Waukesha Wi? Duloxetine is an anti-depressant and not a benzodiazepine, but the drug has been studied to treat anxiety as well. In addition to complex carbohydrates, micronutrients play an important role in providing your body with usable energy from food.

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