After working for a few years in finance, Lee decided to shift his attention toward writing and library studies. I dont have a recipe. Very efficiently written story. The bones become weak and can break and the joints in the foot or ankle can dislocate. This is a complex situation. Alpha lipoic acid is an antioxidant that has been studied mostly in patients with diabetes. Consider joining your local YMCA and take their water aerobics classes. I understand your fear after reading many varying posts, but dont let this fear for your future affect your outlook on life. 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. How did I go to sleep with my shoes on? Fruits. Enjoy it. 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. The neurotoxic drug list was compiled by neurologists and is continually monitored for additions and corrections. One problem is that the full ingredient list in some herbal supplements is not available, accurate or required. 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. Tim, Im looking for solution. In the case of stopping monoamine oxidase inhibitors, such as Nardil, you may experience disorientation, confusion, mild movement disturbances, and even hallucinations. In fact, the most common preventative dose used with other medications such as I.N.H. The general recommendation for ALL people with CMT, however, is that we know a diet low in processed foods, low in sugar, and high in fruits, vegetables and healthy fats is a very important starting point to feeling your best. So, most people can use tonic water occasionally and in moderation as a remedy for leg nocturnal cramps. Charcot-Marie-Tooth disease (CMT) is one of the most common inherited nerve disorders. 2. ANY DIET OR MANNER OF EATING THAT HELPS THE PERSON MAINTAIN AND IDEAL BODY WEIGHT AND GIVES THE PERSON THE ENERGY TO POWER THE BODY, OFTEN NEEDING BETTER NUTRITION TO POWER THROUGH THE ADDITIONAL STRESS ON THE BODY AND BRAIN. I jumped out of bed. As a general rule, shellfish like lobster and shrimp are good sources of iodine, said Ilic. Our doctors do not encourage their use. There are many medications that reduce serum cholesterol levels, but the statins are the most effective and most widely used. Taking downtime and implementing ways to destress is crucial to prevent stress neurotransmitters . Even though eggs have suffered from a bad reputation for a long time, they have finally started to make a comeback. There is no clear indication that Peginterferon alfa-2a (Pegasys) can independently cause peripheral neuropathy or worsen CMT-related weakness. The process, in general, lasts for one to four weeks and then improves depending on the severity of the process. Exercise is so important. If you feel you are doing well incorporating these basic dietary guidelinesn but feel lost or are unhappy with your current energy levels or mobility, it may be worth meeting with a neuromuscular registered dietitian to help develop a more customized direction for you to take with your nutrition. Limit buying foods that are high in sodium, fat, sugar, or starch content. 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. 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. The hammertoes seen in CMT are usually as a result of muscle imbalance and structural misalignment. Consuming foods that are high in fat limits the growth of good bacteria in your gut. Charcot-Marie-Tooth Association Neurologist? By Tasting Table. Foot deformities such as hammertoes and high arches also are common. Diabetes mellitus produces different types of peripheral neuropathies. 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. , and my social media feeds have been flooded with inspirational quotes and infographics related to Charcot-Marie-Tooth (CMT). The agent was placed on the list based on the experience with other types of patients receiving the drug as part of their chemotherapy. Hepatitis-C infection is a much more common cause of neuropathy and one important reason to suppress the virus. Most Metronidazole (Flagyl) treatments are 2 weeks or less and constitute very limited risk. There is no information on whether CMT patients are at more risk than others. Simple carbohydrates, like sugar, candy, syrups/honey and refined grains, can leave you feeling more tired. Yeah, dont believe the lies. I think the whal's diet could help if you are diligent enough. Avoid if you can! This can include straining weakened muscles and joints further and making it more difficult to move around, resulting in further weight gain. by Courtney | Apr 13, 2016 | Living with CMT, Nutrition | 1 Comment. The added chocolate helps with muscle recovery by balancing the carbs, protein, and fat. Anyone who notices a significant decline in strength after taking Ambien should consult his or her physician. What exercising can I do I,am weak using cane. 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 aged 9 yrs and had many more my last one being 4 weeks ago. Cant say enough about how much it has helped me. 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. Charcot-Marie-Tooth disease is also called hereditary motor and sensory neuropathy. 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 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. Most seem to carry similar risk to others with neuropathy from other causesdiabetes, etc. The only agent in that group that has been questioned about a detrimental effect on CMT is Paxil (paroxetine). Ive been trying to go vegan. It turns out that Popeye has been right all along! by When you have CMT it is important to make sure youre eating enough carbohydrates for your muscles to have a steady fuel source, but too many simple carbohydrates can make you feel more tired. There is no known or reported link between worsening neuropathy and either Lomotril or metoclopramide (Reglan). Losing weight with CMT. I've found it horrific. Consuming a healthy and balanced diet alongside a tailored exercise plancan play an important part in managing weight. It does not provide medical advice, diagnosis or treatment. It is adapted from something my mother taught me. Can this diseases cause a metallic taste in mouth? 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. The only B-vitamin clearly known to cause neuropathy from excessive use is pyridoxine (B6). None of these drugs, such as midazolam (Versed), are on the list of agents with increased risk. 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. Lupron suppresses testosterone levels in both men and women, which is an important factor in muscle bulk. Website: bionews.com Its possible that more local weakness than average will be produced in CMT patients, especially if the injections are in the legs. Only. There is no evidence, however, of true worsening of weakness or sensory function. By the end of the day I was wiped out. L-histidine is an essential amino acid that is supplied in adequate amounts in any good diet. Other arginine-heavy foods to stay away from if you have herpes are tomatoes, wheat germ and some fruits like grapes, blackberries and blueberries. Also eliminate cakes, pies, doughnuts, cookies, croissants, muffins and all pastries and snack foods such as chips, most snack mixes and buttered popcorn. In the case of multiple physicians working together, the names of diseases can quickly become long. (Photo by Young Lee). Neurotoxicity is the capacity of chemical or biologic agents to induce functional or structural changes in the nervous system resulting in tissue injury. While there are thoughts on how some of these medications work, how Neurontin stops pain is not clear. I am 5' 1" weighing 155 lbs. For most people, the low doses of quinine contained in tonic water are not enough to trigger serious side effects. 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. Working on your diet and exercise on a daily basis will yield results over time, but it will likely take longer than you hoped. Muscle relaxers like Soma should not affect your nerves or strength, but may cause sedation or sleepiness. When we discuss losing weight, what were really talking about is creating a calorie deficit. Any suggestions?? . Never disregard professional medical advice or delay in seeking it because of something you have read on this website. Similar to eggs, it might depend on how the milk is used that causes the flare-up. Naratriptan (Amerge) is a commonly prescribed migraine treatment in the triptan class and is similar to Imitrex (sumatriptan). However, results published in the New England Journal of Medicine are very promising. The formulation is actually a collection of vitamins intended for patients with high homocysteine levels, an independent risk factor for heart disease and stroke. Mildly increased CK (creatine kinase) values are not a primary reason to withhold a statin drug, but muscle symptoms and CK values should be checked while on the drug. Especially avoid processed deli turkey. 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). Foods to avoid during chemotherapy include: 3. The risk is minimal if the drugs are indicated. Arches also are common on life on whether CMT patients are at more risk others! Understand your fear after reading many varying posts, but dont let this fear for your future affect your or. Neuropathy from other causesdiabetes, etc most seem to carry similar risk to others with neuropathy from other,! Bacteria in your gut affect your outlook on life more difficult to around... Candy, syrups/honey and refined grains, can leave you feeling more tired and their... With CMT, Nutrition | 1 Comment more risk than others this diseases cause a metallic taste mouth. Published in the triptan class and is similar to Imitrex ( sumatriptan ) include straining muscles. 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