Myotonic Dystrophy

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    • #775
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      55YO male with myotonic dystrophy

      Hi All, I have a new client who wants support with Myotonic Dystrophy. I have been doing some research and do not know as yet what type he has, type 1 or 2. Also not sure what symptoms or related conditions. I have read Christine’s post on Muscular Dystrophy which I found very useful. Just wondering if anyone has any more tips or experience for this condition. After i have seen the client tomorrow I can post more details.
      thanks, Jo

      Posted By Joanna Oates 17/5/2018

       

       

    • #776
      Christine Bailey
      Moderator

      Dear Joanna,

      Many thanks for your question regarding your client with myotonic dystrophy.  Muscular dystrophy diseases are a group of disorders that affect the muscular system, the skeletal system and other parts of the body. They span across all races and cultures. Muscular dystrophy is chronic and there are no known permanent cures for this disease at this time. Currently, there are only helpful medical treatments that can slow down the disease’s progression.  In terms of supporting your client it will depend on his current signs and symptoms. Some with muscular dystrophy will experience symptoms that make it difficult for them to carry out basic functions. They may have trouble walking, working or living on their own without help. Others deal with less severe symptoms can carry on living an almost “normal” life for years.

      Myotonic dystrophy is a genetic condition that causes progressive muscle weakness and wasting. It typically affects muscles of movement and commonly the electrical conduction system of the heart, breathing muscles, swallowing muscles, bowels, lens of the eye and brain. The age when symptoms start varies a lot and can be any time from birth to old age. In general, the later the condition starts, the milder it will be. There are two types of myotonic dystrophy. Type 1 tends to be more severe and more common in the UK than type 2. This factsheet will refer to only myotonic dystrophy type 1 apart from the section specific to myotonic dystrophy type 2.  Myotonic dystrophy is caused by a specific genetic change (mutation) within the DMPK gene on chromosome 19.

      There are often associated issues. Many people can develop heart problems. Some people who have myotonic dystrophy may have more trouble with other body systems than they do with their muscles. For example, excessive daytime sleepiness, swallowing difficulties and a range of bowel symptoms may appear unrelated, but they may all be connected to myotonic dystrophy.

      From a nutritional perspective it will need to be tailored to their individual symptoms. Patients with muscular dystrophy may be prone to nutrient deficiency due to mobility limitations or oropharyngeal weakness. Patients with myotonic muscular dystrophy (DM1) may be particularly prone to nutritional deficiencies from associated dysmotility of the entire gastrointestinal tract.  This in turn could also make them prone to bowel changes and microbiota changes – in some cases a stool test may be helpful. I would also consider running a full vitamin and mineral screen as well. Supporting overall gut health and gut barrier health may be beneficial

      Motlagh et al. Nutritional inadequacy in adults with muscular dystrophy. Muscle Nerve. 2005 Jun;31(6):713-8. https://tinyurl.com/ycp5dnlx

       

      There are different thoughts about whether Creatine monohydrate can help muscle strength – some suggest it makes no difference while others suggest it could be helpful. Other nutrients for muscle and energy such as carnitine and coenzyme Q10 may also help

      Tarnopolsky et al. Creatine monohydrate supplementation does not increase muscle strength, lean body mass, or muscle phosphocreatine in patients with myotonic dystrophy type 1. Muscle Nerve. 2004 Jan;29(1):51-8. https://tinyurl.com/yash7hxk

      Tarnopolsky et al. Creatine monohydrate enhances strength and body composition in Duchenne muscular dystrophy. Neurology. 2004 May 25;62(10):1771-7. https://tinyurl.com/y72huukp

      The above study used about 0.10 g/kg/day for 4 months

       

      One of the key concerns is sufficient calorie and nutrient intake due to swallowing issues. Therefore, protein supplements, liquid multi and fish oils may be useful to consider

      Andrenelli et al. Swallowing impairments in Amyotrophic Lateral Sclerosis and Myotonic Dystrophy type 1: Looking for the portrait of dysphagic patient in neuromuscular diseases. NeuroRehabilitation. 2018;42(1):93-102. doi: 10.3233/NRE-172272. https://tinyurl.com/ycaywtb4

       

      Interestingly, there may be an association with coeliac disease. Therefore, consider testing or eliminating gluten from the diet – this may in turn improve symptoms.

      Ravindra et al. Myotonic dystrophy in a patient of celiac disease: a new association? Trop Gastroenterol. 2008 Apr-Jun;29(2):114-5. https://tinyurl.com/ycna7gbk

       

      There is also evidence of greater oxidative stress and in which case antioxidants would be helpful. I would certainly recommend an anti-inflammatory diet focusing on lean poultry, fish, vegetables and some fruit with healthy fats – monounsaturates and omega 3s in particular.

      Kumar et al. Imbalanced oxidant and antioxidant ratio in myotonic dystrophy type 1. Free Radic Res. 2014 Apr;48(4):503-10. doi: 10.3109/10715762.2014.887847. Epub 2014 Feb 20. https://tinyurl.com/y7u56mhc

       

      SUGGESTED SUPPLEMENTS

      The following supplements are suggested for you to consider in light of your relevant expertise and intimate understanding of the needs of your client or patient. It is not intended for them all to be taken, but rather just those that you select. They may be used in isolation or as part of a multi supplement strategy, but at all times the consideration of their use should be tied into the specific needs of the individual you are responsible for.

      Please consider these suggestions in light of the other clinical information pertaining to this individual.  If you have any more information about the specific problems this individual is experiencing, further refinement of these suggestions may be considered.  I hope this information is helpful, and if you have any further questions or information specific to the problems this individual is experiencing, please do provide feedback.

      Gut Support

      Phospholipid Colostrum (ARG) – take 1tbsp twice daily – https://tinyurl.com/zwty66b

      ProGreens (ARG) – take 1 scoop daily – https://tinyurl.com/gtqgbyo

      Protein powder

      Whey Protein Concentrate (BRC) – take 1-2 servings daily – https://tinyurl.com/hslmdzg

      Joint Support

      Arthred Collagen powder (ARG) – take 1tbsp twice daily – https://tinyurl.com/j2arfe4

      CurcumRX (BRC) – take 1 twice daily (emulsified, well-absroebed curcumin supplement) – https://tinyurl.com/yc3yqfwu

      Energy and antioxidant support

      Coenzyme Q10, 100mg with Tocotrienols (ARG) – take 1 soft gels with each meal (3 p.d.) –  https://tinyurl.com/gvh56hb

      Multi nutrient formula

      Aqueous MultiPlus (BRC) – take 1tbsp daily

      Fish Oil

      Nordic Naturals Arctic Cod Liver Oil with Vitamin D Lemon – take 1-2 tsp daily

      I hope this helps answer your question

      Christine

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