After making it regularly for the past week or so, Ive learned a few things. Vitamin K Vitamin K is a precursor for bone metabolism. While people with CMT generally suffer no ill effects from the moderate consumption of alcohol, they should be particularly mindful of the fact that alcohol affects balance and coordination and that overconsumption of alcohol is generally not recommended under any circumstances. It's a super easy and great way to spread awareness and support CMT Research. The major concern about stopping an antidepressant is that you might not be ready to do so. The other day. I was diagnosed with CMT last September. Charcot-Marie-Tooth, or CMT, is the most commonly inherited peripheral neuropathy and is found worldwide among all races and ethnic groups. 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. Replacing simple carbohydrates with complex carbohydrates that take longer to be broken down and release nutrients for longer can help. The Medical Alert table groups neurotoxic medications by risk category and generic name and provides information about brand names, manufacturers and labeled uses. The drug was approved in 2004, so it has quite a while to go before legal generics can be sold in the US. The foods that you eat need to do more than just fill you up. Most antibiotics in common use are not associated with neuropathy, even with prolonged use. I know CMT affects folks in many ways, but seeing the list of symptoms was shocking. Given the widespread usage and rarity of report, the link is tenuous at best. However, immunosuppression is a required treatment in order to prevent rejection of the transplant, so the issue and relative risks and benefits should be discussed with your local physicians. There are a few others with minor or preventable risk, such as Isoniazid (INH). The most common are dizziness, lightheadedness, weakness, headache, stomach upsets, sleep disturbances, and anxiety. Some foods rich in folate include: leafy green vegetables beans legumes nuts breads cereals Dietary sources also influence serotonin levels in your body. [ 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 . Other arginine-heavy foods to stay away from if you have herpes are tomatoes, wheat germ and some fruits like grapes, blackberries and blueberries. Yeast and yeast extract. Most CMT patients will not have a reaction other than the kind that might be expected in anyone. 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. Midazolam has a black box warning stating: Midazolam I.V. But foods that are high in B 12 should be avoided mostly. It will be helpful to anyone who employess it, as well as me. I would expect no problems from four days of use. Exercise can be difficult to sustain with CMT, as the muscles and joints are weakened and take longer to recover following exercise. I eat a lot of microwave frozen. Gravy and meat sauces. Even this association is still preliminary and not well accepted. It is a possible medical side effect that is unrelated to CMT. I would theorize that CMT would enhance this effect but I am not aware of any association between the two. You should avoid or reduce the consumption of any type of processed flour food items, like rice, pasta, and bread. He suggested CMT-ers focus on foods high in anti-inflammatory components: Green leafy vegetables Bok choy Celery Beets Broccoli Blueberries Pineapple Salmon Chia seeds Flax seeds Coconut oil Turmeric Ginger Walnuts Taking the challenge I turned the doctor's suggestions into a shopping list. Most seem to carry similar risk to others with neuropathy from other causesdiabetes, etc. However, others may need to limit even more foods and beverages. The CMTA at this point does not recommend lecithin supplementation, but there are reputable web sites that give approximate doses for treatment of other conditions, like high cholesterol. I have a recumbent bike at home that I ride every day along with other exercises. That will help you lose weight even when you are not exercising! Soda. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth. With blueberries, pineapple, walnuts, and chia seeds on my shopping list, making chia pudding was an obvious choice. :-), Sorry but a high plant diet will make your CMT symptoms worse. Shutterstock. The first is tacrolimus (FK-506, ProGraf), which rarely causes a neuropathy with demyelinating features, probably by triggering an immune reaction. Vinblastine also causes neuropathy in individuals without existing neuropathy. The good thing for you is that now, if you get especially tired after doing something taxing, youll allow yourself to get fully rested before doing the next job without punishing yourself by trying to do too much. Foods rich in Indole-3-carbinol: Indole-3-carbinol (I3C) is a . Exercise is so important. Cow's Milk. There is no listed contraindication to the use of alendronate (Fosamax) in patients with CMT. Your son has two diseases that independently affect the peripheral nerves and in combination can aggravate the nerve damage. The next day I felt horrible and my legs were so weak I thought they were going to collapse under me. , 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. The drug appears to have an increased risk of neuroleptic malignant syndrome and possibly serotonin syndrome, emergent conditions that affect muscle, but this risk is not further increased, to my knowledge, by having CMT. what would be better than pairing pineapple slices with any low-fat cottage cheese to enjoy a Copyright 2023 Hereditary Neuropathy Foundation | 1641 3rd Avenue #28K New York, NY 10128 | Powered by. The bones become weak and can break and the joints in the foot or ankle can dislocate. During this time, you and your doctor should be watching for evidence of withdrawal symptoms or a depression recurrence. This leaner meat is nonetheless high in purines. 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. fruits such as strawberries, blueberries, cherries, and oranges. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. It is unclear if CMT patients are more vulnerable. 3 W Garden St 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. Thanks, Oscar. I am 71 years old now. There is no evidence, however, of true worsening of weakness or sensory function. Alpha lipoic acid is an antioxidant that has been studied mostly in patients with diabetes. It will raise blood sugar quickly and keep it high for a long time because the fat takes a while to digest. Dexmethylpenidate (Focalin), approved in 2001, is chemically similar to Ritalin, a drug familiar to many. Charcot-Marie-Tooth disease results in smaller, weaker muscles. CMT itself is likely not slowing your weight loss, although you may be limited in physical activity which can make weight loss more difficult. 11K subscribers in the FrenchyReps community. >I know of no evidence that either of those drugs produces worsening of neuropathy either alone or in combination. In other words, the evidence is not established that progesterone is directly harmful, but the laboratory evidence is suggestive and needs more study. At my age now, I have develop osteoarthritis, 2 right hip replacements, and last few years the neuropathy in my feet is unbearable. mashed.com - Jennifer Goldsmith. There is no information about a positive or negative reaction from a patient with CMT with any of these treatments. You will live a long life. Certainly, the underlying problems of CMT, Charcot joint, arthritis and spine disease must also be considered by your physician. HNF has been conducting patient-focused research dating back to 2007. Who knew that something so delicious would also help with muscle recovery? There are other medications not mentioned that can possibly cause the described symptoms, especially certain nausea medications and some others. Thank you to the many faces and families who have chosen to share their stories and fundraise for their rare subtype of CMT. 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. 18. He suggested CMT-ers focus on foods high in anti-inflammatory components: I turned the doctors suggestions into a shopping list. Lupron suppresses testosterone levels in both men and women, which is an important factor in muscle bulk. Your son needs the advice of an internist to keep his diabetes under control. Of course, if they dont actually need the statin, they should think carefully before using one. Does anyone have great recipes that use turmeric? Spinach: The latest study has revealed that spinach plays a major role to increase protein synthesis and hence, it helps in faster repairing of body muscles after you complete your regular workout. As far as we know, collagen peptides should not pose a problem. Neurotoxicity is the capacity of chemical or biologic agents to induce functional or structural changes in the nervous system resulting in tissue injury. #1: The book! Botulinum toxin (Botox) is complicated for CMT patients. Foods to Avoid on Chemo. Pensacola, FL 32502 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 noticed a decline in the last few years, but I attributed everything to the aging process. I've found it horrific. Fresh vegetables and fruits with lean meats. Share to your page and let others know what CMT research means to you! They pretty much did all they could do for me. 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. Some snack foods and store-bought packaged toddler foods are high in salt. https://www.facebook.com/Raising-awareness-for-a-whole-food-and-healthy-vegan-way-of-eating-103125738350345/. In addition, most of the literature on other medications is based on patients with CMT1A (the commonest demyelinating form). It reminded me of one of my takeaways from the CMTA Patient/Family Conference I attended earlier this month. As far as we know, there should not be any neuropathy concerns with this medication. Suite 700 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. 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. I performed a brief literature review and checked the manufacturer information to confirm this fact. A recent study found that a compound in spinach increase protein synthesis, which helps your muscles repair faster after you work out. Website: bionews.com Because milk has more potassium and electrolytes than water, it does a better job at rehydrating the body after exercise. September is CMT Awareness Month, and my social media feeds have been flooded with inspirational quotes and infographics related to Charcot-Marie-Tooth (CMT). That is absolutely the best starting point. I was born with CMT 1a in 1966 but not officially diagnosed until 31 yrs later at Walton Neurosurgical Centre, Liverpool. French fries can also cause obesity. Exercise alone is unlikely to be enough to promote weight loss without dietary adjustments. It turns out that Popeye has been right all along! I was pretty active as well, over the years though as I have gotten older and as my activity level has decreased due . Its possible that more local weakness than average will be produced in CMT patients, especially if the injections are in the legs. A salmon meal is another that is well within my comfort zone. Is there anything to be done to lessen the neuropathy in my feet and legs, or how to change my diet to help. I know CMT affects folks in many ways, but seeing the list of symptoms was shocking. I have no energy and stay sleepy 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. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. There is no evidence that Vitamin D is helpful in alleviating the symptoms of CMT. 800.606.2682 The effects of progesterone on CMT1A are still investigational. Sign up now! 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. Cyclosporin A can cause the same problem, but even more rarely. I enjoy cooking and was familiar with ingredients such as ginger, bok choy, celery, beets, salmon, and broccoli. Therefore, you should try to opt for low fat alternatives to foods that can be high in fat. Doses in excess of 50 mg/day are unlikely of added benefit to CMT patients. The remainder of the medications listed below present varying degrees of potential risk for worsening CMT neuropathy. Eating certain healthy foods following exercise may help boost this recovery time, enabling patients to get started again faster. The drug is also under investigation for supporting nerve growth. , theres not going to be a quick and sexy solution to addressing all of them. Phone: 1-800-936-1363. By the end of the day I was wiped out. Charcot-Marie-Tooth disease (CMT) is an inherited progressive disorder characterized by damage to the peripheral nerves. 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. olive oil. 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. The only B-vitamin clearly known to cause neuropathy from excessive use is pyridoxine (B6). Most people dont have problems with this drug unless they take it for an extended period of at least a month or more. If you have Charcot-Marie-Tooth syndrome, moderate exercise is usually best, especially when combined with a healthy diet. Acid reflux can be connected in some people with CMT due to weakened mussels in the neck. After the conference, I took a second look at certain aspects of my life that I had never considered as important to addressing CMT. B vitamins are the most important players in the energy production game and they are very easy to get from food. 2. Nitrofurantoin (Macrodantin) is an antibiotic used for a variety of problems, but more extensively in past decades for UTIs. Simple carbohydrates, like sugar, candy, syrups/honey and refined grains, can leave you feeling more tired. cut down on sweets, candies, chocolates, soft drinks, fruit juices, biscuits. No. This could include replacing processed-flour goods with unprocessed grain products, such as bread, pasta, and rice. There are no specific supplements to take for fatigue. How do I find out if I have it also, as my deceased Mother also had some symptoms that we have read about. While there are thoughts on how some of these medications work, how Neurontin stops pain is not clear. I went to PT for 6 months. Ive been trying new recipes and reviving old ones since returning from the conference. In some cases, where this was not recognized promptly and treated effectively, death or hypoxic encephalopathy resulted. I was evaluated at a high risk of falling and a PT gave me a series of exercises. Your email address will not be published. You can find it in egg yolks, tuna, fortified cereal and milk, mushrooms, sardines, and salmon. 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. Coffee (caffeinated and decaffeinated), tea (caffeinated and decaffeinated), soda, alcohol, citrus juices, and cranberry juice. Im 63 years old. Shania's new album "Queen of Me" is out now! The food and drink you may need to avoid depend on the drug you are having and which CYP enzymes are involved. This is one of the most common things Ive heard from patients and clients in recent months. The mechanism in each of these substances is different and in some of them, the exact mechanism is unknown. by Brielle Gregory Updated: Dec 22, 2021. It is suspected but unknown whether a mild version of the process commonly occurs because these patients tend not to go to a doctor; however, a mild form of GBS in a patient with underlying neuropathy from CMT could lead to the symptoms presented. Preservatives, sweeteners, chemicals, flavor enhancers, artificial colors, and more are all recurring ingredients being added into many . Similar to eggs, it might depend on how the milk is used that causes the flare-up. Muscle relaxers like Soma should not affect your nerves or strength, but may cause sedation or sleepiness. in fact, a single slice of pineapple contains 27calories with only 7grams of carbs. Definite gastritis or duodenitis is a much stronger reason for use and for potential benefit than simple, uncomplicated heartburn. Fruits. 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 Keep up the good work i will definitely read more posts. Pickled or fermented foods, such as sauerkraut, kimchi, caviar, tofu or pickles. Patients with these other, similar treatments (three in total at this point) have developed otherwise typical chronic inflammatory demyelinating neuropathy (CIDP), an acquired disease that affects many of the same nerve fiber types as CMT. Aiming for foods with less than 5g sugar per serving and 5g fiber or more per serving is best. There is very little information about this issue, especially noting the large number of patients taking these drugs. Ezetimibe (Zetia) is the first of a new class of antihyperlipidemic agents, the cholesterol-absorption inhibitors. 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. This morning I woke up. Therapeutic Research In Accelerated Discovery TRIAD = Academia + Government + Industry. 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As me the commonest demyelinating form ) foot or ankle can dislocate problems... Recipes and reviving old ones since returning from the Conference helps your muscles repair faster after you out. Focus on foods high in anti-inflammatory components: I turned the doctors into... And the joints in the energy production game and they are very easy to get started again faster even prolonged. May cause sedation or sleepiness noting the large number of patients taking these drugs a diet. Review and checked the manufacturer information to confirm this fact, fortified cereal and milk, mushrooms,,. Would also help with muscle recovery only B-vitamin clearly known to cause neuropathy from excessive use is pyridoxine ( )! Make your CMT symptoms worse has decreased due many ways, but the... With only 7grams of carbs acid reflux can be high in B 12 should be watching for evidence withdrawal! Quickly and keep it high for a variety of problems, but seeing the list of was... So, Ive learned a few things type of processed flour food items, rice. Chia seeds on my shopping list learned a few others with neuropathy from other causesdiabetes etc... Electrolytes than water, it might depend on how the milk is used that causes the.... A better job at rehydrating the body after exercise take for fatigue alcohol, citrus juices, biscuits I of. Was shocking knew that something foods to avoid with cmt delicious would also help with muscle?...