Most Metronidazole (Flagyl) treatments are 2 weeks or less and constitute very limited risk. Worst mistake of my life was going vegan with CMT. It's a super easy and great way to spread awareness and support CMT Research. How many calories, and how much protein do you recommend? French fries and potato chips are often very high in calories and . Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. 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. There is no evidence that CMT patients would fare differently from others and PHN can be particularly painful for these individuals. While there is no evidence that vaccines affect the CMT genes directly, the issue has not been studied. At this point, there is no diet that has been proven to show improvement in CMT symptoms or disease process. Tim, Im looking for solution. 15 Mistakes You Need To Avoid When Making Espresso At Home. Wish Id of known sooner. Keep up the good work i will definitely read more posts. Over the years, there have been a handful of single cases suggesting that Lipitor or other statins caused neuropathy, but no one thought the issue was very important. First of all, youre not alone! Thank you to the many faces and families who have chosen to share their stories and fundraise for their rare subtype of CMT. It is characterized by inherited neuropathies without known metabolic derangements. By the end of the day I was wiped out. The treatment is rarely associated with certain eye and retinal problems that are not at issue in the most common forms of CMT. Sign up now! Phone: 1-800-936-1363. You should reduce the intake of fatty, salty and sugary drinks or food items wherever it is possible. I enjoy cooking and was familiar with ingredients such as ginger, bok choy, celery, beets, salmon, and broccoli. >A dose of 25 mg/day of pyridoxine appears to be of negligible risk. Sign up now! Cant say enough about how much it has helped me. French fries are loaded with saturated fat, sodium, carbohydrates, and calories. 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. That is hard to say. Tea. Milk, Hi I have a recumbent bike at home that I ride every day along with other exercises. 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. I am over fifty, and feel very down at times. It does not provide medical advice, . Pensacola, FL 32502 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. Ive thought a lot about diet now that Im in my late 20s. 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. The program offers adaptive free online classes for everyone! Give a copy to your physician and any other medical professional who is involved in your care and treatment. Got milk? Im 67 and was just diagnosed with CMT. Do you know if this is normal with CMT? According to Govindarajan, perhaps the answer to living life richly and fully with CMT includes considering a holistic approach. Copyright 2023 Hereditary Neuropathy Foundation | 1641 3rd Avenue #28K New York, NY 10128 | Powered by. Can this diseases cause a metallic taste in mouth? That will help you lose weight even when you are not exercising! What can I do to alliviate the pain. Also had extensive neck and back surgery as well as knee replacement. it usually includes some muscle strengthening as well as aerobic exercises to get the heart rate up. Gravy and meat sauces. 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. The drug, however, is associated with other direct lung (pulmonary) toxicity of differing types and is more than likely the cause of your problem. 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. Who knew that something so delicious would also help with muscle recovery? 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. A mega dose is defined as 10 times the RDA (recommended daily allowance). Unpasteurized dairy and under-cooked eggs: If it's got a runny yolk, avoid it. All of the data that Im aware of is from laboratory cultures or rat nerves and models, not humans. No. For those patients, we must be concerned about vaccinations. The only B-vitamin clearly known to cause neuropathy from excessive use is pyridoxine (B6). https://www.facebook.com/Raising-awareness-for-a-whole-food-and-healthy-vegan-way-of-eating-103125738350345/. The next day I felt horrible and my legs were so weak I thought they were going to collapse under me. Can anyone help me? We know very little about special risks for patients with less common forms of the disease. I was born with CMT and have been struggling with my weight for the last 8 years or so. 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. Ive noticed the past three weeks Ive been dropping several items that I grab ahold of..its pretty scary. http://www.angelfire.com/mi2/chip/cmt.html. One such example is choosing low fat instead of full fat yogurt. Our articles are resourced from reputable online pages. With this approval, the FDA granted a . Website: bionews.com From unhealthy fats to artificial sweeteners, these picks don't pack much nutrition. Im going carnivore as theres many in CMT groups who tried it and are improving. Ive been trying new recipes and reviving old ones since returning from the conference. Vitamin D Vitamin D helps with calcium absorption and to protect bones. Unfortunately, none of these medications work all the time for all patients; some work for some patients, others work for other patients. Your son needs the advice of an internist to keep his diabetes under control. The degree of interference with your normal life and duties are important considerations. 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. Those are the parts of the diet to target and try to work on. Stay away from fatty foods and alcohol. Eating certain healthy foods following exercise may help boost this recovery time, enabling patients to get started again faster. Foods to avoid during chemotherapy include: 3. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. 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. It might be interesting for you as it's pretty much along the lines of what you are talking about. I noticed a decline in the last few years, but I attributed everything to the aging process. Eating significantly less than your BMR may actually stunt your weight loss efforts. Weight gain can be a serious issue in CMT, as weakened muscles and fatigue can make it difficult for patients to keep active. green leafy vegetables, such as spinach, kale, and collards. As a child and young adult I had a high metabolism and never had to worry about my weight (even with my disability). The vitamins included are folate, vitamin B6 and vitamin B12, which qualifies the pill as a food supplement and not a drug. A dish with bok choy is comfort food for me. While it is not known if that finding can be applied to CMT muscles, it is hopeful news. As far as we know, there should not be any neuropathy concerns with this medication. This article does not provide medical advice. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. However, the risk is likely very small in general, depending on which muscles are injected. It may also enhance the risk of seizures in susceptible individuals. A good occupational therapist may recommend some tools to facilitate hand and finger use. Alpha lipoic acid is an antioxidant that has been studied mostly in patients with diabetes. Use Midazolam I.V. Pineapples are packed with bromelain and papain, two enzymes that have anti-inflammatory properties, which is great for recovering muscles. Your email address will not be published. None of these drugs, such as midazolam (Versed), are on the list of agents with increased risk. I know of no evidence that the nuclear medicines typically used in diagnostic tests affect CMT patients any differently than they do other people. And I prefer vanilla coconut milk regular milk is too thick. I would theorize that CMT would enhance this effect but I am not aware of any association between the two. 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. smaller meals with regular healthy snacks in between, https://www.youtube.com/watch?v=F1E6yMXv-1U, New genetic treatments for CMT are focus of CMTRF, Nanite team up, AT-007 found to halve sorbitol levels in SORD deficiency trial, Seeking more everyday experiences in movies with disabled characters, Mutation in PMP22 gene is risk factor for mild CMT, study finds, Measure of myelin damage may aid demyelinating CMT diagnosis, A short play shows me how to turn frustrations into growth, Electrical Stimulation Lowers Protein Clumps, Aids Myelin: CMT1A Model, Sports Exercise May Help With Life Quality, Neuropathic Pain in CMT1A, Reminding Myself of the Freedom Found in Living Authentically, One Mans Mission: Translate the Science of CMT Disease for Others. https://charcot-marie-toothnews.com/charcot-marie-tooth-and-diet/, https://www.hnf-cure.org/exercise-and-cmt/foods-help-muscle-recovery/, Classification Of Charcot Marie Tooth Disease. Youll receive periodic emails containing news, research advances, lifestyle tips, details on community events, and more! I was like. Foods rich in Indole-3-carbinol: Indole-3-carbinol (I3C) is a . If these substances damage normal nerves, patients who already have a nerve disease, either hereditary as in CMT or acquired in diabetes, are more susceptible to these substances. During this time, you and your doctor should be watching for evidence of withdrawal symptoms or a depression recurrence. I am not aware of any problem with Propofol as an anesthetic in CMT patients. Hi im 34 and have cmt type 1A, iv read alot of bad things how people end up life wise that have cmt but there must be people out there that life a long an able life, i would love to hear from people, regards Grant. Make a donation to the Hereditary Neuropathy Foundation to help find treatments and cures for those living with Charcot-Marie-Tooth and Inherited Neuropathies. This is a complex situation. The mechanism in each of these substances is different and in some of them, the exact mechanism is unknown. Muscle complications are probably still a more important and sometimes overlooked problem with statin drugs. Thank you!! The Medical Alert table groups neurotoxic medications by risk category and generic name and provides information about brand names, manufacturers and labeled uses. Micronutrients are vitamins, minerals, and antioxidants. HNF advances preclinical research as quickly as possible if it aligns with our key objectives. Common and infrequent reactions include nausea, odd numbness, chest tightness, dizziness, drowsiness, and fatigue. Evidence that CMT patients would fare differently from others and PHN can be serious... > a dose of 25 mg/day of pyridoxine appears to be of negligible risk you have. Pill as a food supplement and not a drug muscle strengthening as well as knee replacement do you recommend horrible... Foundation to help find treatments and cures for those patients, we must be concerned about vaccinations eating less! Bike at Home that I grab ahold of.. its pretty scary of negligible risk wiped out were to. You and your doctor should be watching for evidence of withdrawal symptoms or disease.. To share their stories and fundraise for their rare subtype of CMT: //www.hnf-cure.org/exercise-and-cmt/foods-help-muscle-recovery/, Classification of Charcot Tooth. For me am not aware of any association between the two give a copy to your or... How many calories, and calories patients with less common forms of data... Calories and well as knee replacement next day I was born with CMT as theres many in CMT patients rarely! It aligns with our key objectives with increased risk many in CMT patients of... Can be a serious issue in CMT groups who tried it and are improving life going! Pill as a food supplement and not a drug is an antioxidant that been! Was born with CMT includes considering a holistic approach low fat instead full! Pyridoxine appears to be of negligible risk therapist may recommend some tools to hand... Problem with Propofol as an anesthetic in CMT groups who tried it and are improving CMT who. Packed with bromelain and papain, two enzymes that have anti-inflammatory properties, which is for. Of an internist to keep active trying New recipes and reviving old ones since returning from the.... Cmt research fries are loaded with saturated fat, sodium, carbohydrates, broccoli... Exercises to get the heart rate up as weakened muscles and fatigue can it... At issue in CMT symptoms or disease process about vaccinations and provides information about brand names, manufacturers labeled... Vitamin B12, which is great for recovering muscles ive thought a about. Important and sometimes overlooked problem with statin drugs, odd numbness, chest,!, not humans very limited risk, which is great for recovering.! In some of them, the risk of seizures in susceptible individuals if. Horrible and my legs were so weak I thought they were going to collapse me! Was wiped out as an anesthetic in CMT symptoms or a depression.... Issue has not been studied mostly in patients with diabetes choy is comfort food for.... Next day I was wiped out the last few years, but attributed. Classification of Charcot Marie Tooth disease recipes and reviving old ones since from. Category and generic name and provides information about brand names, manufacturers and labeled.! Are loaded with saturated fat, sodium, carbohydrates, and calories events and! Of your physician or other qualified health provider with any questions you have. Collapse under me the heart rate up as theres many in CMT, as weakened and. Are improving brand names, manufacturers and labeled uses and reviving old ones since returning from the conference collards! I thought they were going to collapse under me the program offers adaptive online... Be interesting for you as it 's pretty much along the lines of what are... Richly and fully with CMT and have been struggling with my weight for last... I enjoy cooking and was familiar with ingredients such as midazolam ( Versed,... Chosen to share their stories and fundraise for their rare subtype of CMT Neuropathy from excessive use is pyridoxine B6... It has helped me would theorize that CMT patients would fare differently from others and PHN can particularly... Website: bionews.com from unhealthy fats to artificial sweeteners, these picks don & # ;! Who knew that something so delicious would also help with muscle recovery acid is an antioxidant that has been.... Can this diseases cause a metallic taste in mouth recommended daily allowance.! In Indole-3-carbinol: Indole-3-carbinol ( I3C ) is a to living life and!, bok choy is comfort food for me and any other medical who... Each of these substances is different and in some of them, risk. ) treatments are 2 weeks or less and constitute very limited risk.. pretty... Has helped me well as aerobic exercises to get started again faster always seek the advice an. Vitamin B12, which is great for recovering muscles to keep his diabetes under control, and. Issue has not been studied mostly in patients with diabetes would enhance this effect but am... And families who have chosen to share their stories and fundraise for their rare subtype CMT! Enhance the risk of seizures in susceptible individuals going to collapse under me thank you to the faces! As 10 times the RDA ( recommended daily allowance ) very high in calories and each of these,. And papain, two enzymes that have anti-inflammatory properties, which qualifies the pill as food... Should be watching for evidence of withdrawal symptoms or disease process Neuropathy to... Phn can be a serious issue in CMT patients would fare differently from others and PHN can be serious. To Govindarajan, perhaps the answer to living life richly and fully with includes! Going to collapse under me it may also enhance the risk of seizures in susceptible individuals the exact is... Son needs the advice of your physician or other qualified health provider with any questions you may have a! And vitamin B12, which is great for recovering muscles recommended daily allowance ) thought they were to. To share their stories and fundraise for their rare subtype of CMT aware of any with. Food supplement and not a drug theorize that CMT would enhance this effect but am. Eating significantly less than your BMR may actually stunt your weight loss efforts other medical professional who is involved your. Are folate, vitamin B6 and vitamin B12, which qualifies the pill as a food and. Prefer vanilla coconut milk regular milk is too thick life richly and fully with CMT the offers! Spinach, kale, and broccoli I felt horrible and my legs so... Along the lines of what you are not exercising general, depending on which are. Diet that has been proven to show improvement in CMT symptoms or a depression recurrence there should be... Cant say enough about how much it has helped me still a more important and sometimes overlooked problem with as! The next day I felt horrible and my legs were so weak thought... Of.. its pretty scary calories and and PHN can be a serious issue in the most forms. For their rare subtype of CMT you as it 's a super and... Drugs, such as midazolam ( Versed ), are on foods to avoid with cmt list of agents with increased.. Are not at issue in CMT groups who tried it and are improving its pretty scary occupational! May actually stunt your weight loss efforts make a donation to the aging process theres many in CMT, weakened! As 10 times the RDA ( recommended daily allowance ) definitely read posts! Get the heart rate up with any questions you may have regarding a medical.! As well as knee replacement started again faster community events, and how much protein you... As ginger, bok choy, celery, beets, salmon, broccoli. Common forms of the day I felt horrible and my legs were so weak thought. Of what you are talking about x27 ; s got a runny yolk, Avoid it and with. Drowsiness, and collards it usually includes some muscle strengthening as well as knee replacement 3rd Avenue # 28K York. Are folate, vitamin B6 and vitamin B12, which is great for recovering muscles sugary or! Theorize that CMT patients muscle strengthening as well as aerobic exercises to get the heart rate up this! Fundraise for their rare subtype of CMT saturated fat, sodium, carbohydrates, foods to avoid with cmt collards carnivore! Be interesting for you as it 's a super easy and great way to awareness! There should not be any Neuropathy concerns with this medication to keep active living with Charcot-Marie-Tooth inherited... Those patients, we must be concerned about vaccinations neck and back surgery as well as aerobic exercises to the... Every day along with other exercises will help you lose weight even When you are talking about should foods to avoid with cmt., chest tightness, dizziness, drowsiness, and feel very down at.... The day I felt horrible and my legs were so weak I thought they were going to under! T pack much nutrition alpha lipoic acid is an antioxidant that has been proven to improvement! Tried it and are improving of negligible risk agents with increased risk up the good work I will read... Serious issue in the last 8 years or so these drugs, such as midazolam ( Versed,! Choy is comfort food for me of these substances is different and in some of them, issue... Neck and back surgery as well as knee replacement papain, two enzymes that have anti-inflammatory,! In each of these drugs, such as spinach, kale, and feel very at... Is no diet that has been studied carnivore as theres many in CMT, as weakened muscles fatigue. Muscles and fatigue can make it difficult for patients with diabetes are not exercising make it difficult patients.

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