Viewing 13 posts - 1 through 13 (of 13 total)
  • #184196
    Medication to slow down MD

    I am awaiting my muscle biopsy and then shortly after i should receive full diagnose of my issue

    I am a father to a young active 3 year old,i want to remain walking and mobile for as long as possible

    I have spent many hours researching and i have found multiply evidence that HMG- Human growth hormone injections can help with strength and would delay loss of walking, i would love to be fully mobile until my son is a adult

    I read also there are side effects like any thing taken but i think being mobile longer offsets any side effects.

    My main aim is to be mobile while my son is growing up, i know its a big ask but i am looking into all options available

    See below information

    Highlights
    •Muscular dystrophies are characterized by progressive muscle wasting.
    •There are no disease-specific treatments available for muscular dystrophies.
    •Growth hormone was hypothesized to improve muscle strength in muscular dystrophies.
    •Growth hormone supplementation may improve muscle strength in calpainopathies.
    Abstract
    The aim was to investigate if daily low-dose treatment with recombinant human growth hormone (somatropine) can stabilize or improve muscle strength and walking capability in a patient with dominantly inherited calpainopathy. The patient was treated with daily injections of somatropine, except for a 6-month pause, over a period of 4.5 years. Efficacy was assessed by repeated muscle dynamometry tests and 6-minute walk tests (6MWT). Strength improved in most muscle groups on treatment, deteriorated in the 6-month off treatment, and improved again when treatment was resumed. The 6MWT stabilized during the initial 18-month treatment period, then deteriorated in the 6 months off treatment and improved to pre-trial levels when treatment was resumed.

    The findings suggest that supplementation with somatropine, within physiological ranges, may improve muscle strength and stabilize walking capability in a patient with calpainopathy. This finding calls for testing of somatropine supplementation in muscular dystrophies in a randomized study.

    Joe
    Participant
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    Joined: 01/01/2020
    #184364
    Reply To: Medication to slow down MD

    Sorry to hear about your recent health issues, there is never a good time in life to learn you may have a progressive condition I suppose, I found out at 28, I’m 44 now. I bet your wee lad keeps you busy? They get up to everything at that age, don’t they? My daughters are aged 17 and 14, they are unaffected themselves, but carriers of Becker Muscular Dystrophy. If they ever have a son, there is a 50/50 chance the child would be affected. BMD passes from mother to son you see.

    I am up at this late hour searching online for a walking pole, stick etc. One that doesn’t look awful will do! I used elbow crutches in 2010-12, but I foolishly allowed my concerns about appearance to put me off. I never found them much use anyway! I still fell over on occasion. I have been walking (carefully) about since 2012 without them, but a nasty bump on the head last Saturday when I fell crossing the road. has made me re-consider. (Fed up getting nagged at by concerned family too.)

    I hope you get your results back soon, at least knowing what you’re dealing with is a start.

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #184520
    Reply To: Medication to slow down MD

    Thank you for your reply, i am using knee supports which you can get from any fitness shop however i am now looking to get these knee braces with springs built in on the sides as helps with standing up from a chair.
    i have lost muscles that support the knee so need these and work well.

    If possible could you write about your progressive condition since 28 to now at 44.

    Joe
    Participant
    Posts: 0
    Joined: 01/01/2020
    #184521
    Reply To: Medication to slow down MD

    I have started taking the following supplements daily

    Soy Protein Isolate Vegan Protein Powder
    Acetyl L-Carnitine Tablets 500mg – High Strength
    HMB Hyper Strength Amino
    Co-Enzyme Q10
    Creapure Creatine Monohydrate
    High Strength Vit D Cholecalciferol
    High Strength Vit C
    Resveratrol
    Vitamin B12 1000mcg Methylcobalamin
    Spirulina Tablets
    Chlorella Tablets

    I went vegan for 2 months last year and felt amazing and healthy so i am about to start that again, it is alot of prep to be fair so hence why i stopped. meat contains advanced glycation end products which causes increase inflammation in the body.

    Watch the Game Changers if you have netflix

    I am now strongly researching synthetic testosterone as the androgen receptors respond to testosterone by signaling muscle cells to increase muscle protein synthesis as with MD the rate of muscle protein synthesis is insufficient to replace degraded proteins in a hope it will slow things down, i know there is no cure i am just looking to slow things down so i can live a normal-ish life even if it means taking a few years of the end number i destined to go at

    Joe
    Participant
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    Joined: 01/01/2020
    #184523
    Reply To: Medication to slow down MD

    Woah there, steady on with the alphabet soup! I have pretty much no clue what all that means! Actually I tell a lie, my Staffordshire Bull Terrier has spirulina powder in his raw feed,; some kind of algae I believe.

    I wish I had your discipline with regards to food, I just seem to live on convenience food and beer! I will have to moderate this somehow as I am getting more than a little porky this last year or so.

    I did ask the neurologist whether I might benefit from leg braces, but she said it wouldn’t benefit me. I was encouraged to go to physio however, not that it did any good as i couldn’t do any of the exercises. I kept telling the bloke that my quads were too wasted and if I squat I can’t get up again. A lot of these health professionals don’t seem to know what muscular dystrophy is if you ask me. He actually said I would get better with practice. Just which part of “muscle wasting disease” didn’t he understand?

    There is no way I could write any sort of account of my condition since 2003, the glacier like pace of progression with me means I probably haven’t really noticed any change. I struggled in 2003 almost the same as I do in 2020, the change has been incredibly slow. The first cramp I the groin area I had was in about 1984, but this was just put down to “growing pains” at the hospital.

    I was never the quickest at school sports and had these mysterious cramps at intervals, but nothing massively out of the ordinary. I joined the TA aged 17, and left aged 25. The end of 2000 was when I physically couldn’t break into a run any more, I just fell over when I tried. I had been feeling unstable running since about 1998, especially going downhill, the inability to run happened very quickly, I still have no idea why I didn’t take it more seriously back then, but I just allowed myself to be told I wasn’t fit and not trying etc. It wasn’t until 2003, that my then wife nagged me into seeing my GP, as I was struggling going up the stairs at home etc. A simple blood test sent off to the hospital showed beyond doubt that I had Becker MD.

    There aren’t any muscle centres in Scotland, I don’t know whether I can ask to be referred to Newcastle, I will have to make enquires on that score. Apart from the annual visit to the neurologist (5 minute waste of time), with the sometimes ECG afterwards, I see no other health professional. I did have contact a couple of years ago with a genetics nurse who was very helpful with my PIP application. She came out to visit me and actually filled in the forms as we talked.

    This using a stick business, this has been a hard one for me. I know it might just seem like vanity on my part, but it goes deeper than that. I have been on my own since the end of 2008, and I had always had hope, no matter how little, that I would meet someone and have an actual sex life whilst I am still able, the window grows smaller with each passing year! I gave up internet dating in 2014. It had always been a minefield what with having to make sure the pub or wherever was all on the ground floor, so I could charm them first, before revealing at a later date that I had a disability. I had some quite positive experiences in 2009-2011, but got cold feet and ended the relationship when it got too serious (My girls were still wee then, and I was having a lot of hassle with the ex. That didn’t really help.)

    The experience of 2014 really hurt me and I took quite a while to put it behind me. I had met a divorcee of similar age to me and we seemed to get on great, even if she had a toilet mouth that would shame a navvy. When we got down to business, I was obviously not the most powerful man she could have met, and she laughed at me and called me “pathetic”. Not the reaction I was looking for obviously!

    Therefore, to me, the picking up of a stick signifies me finally closing the door on the hope of future romance. I will be fully embracing disability and leaving behind the “normal” world.

    I have said more than I intended, are you some sort of therapist? Phew!

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #184525
    Reply To: Medication to slow down MD

    Just a brief note for you . I also use sticks. i use standard walking poles. They support all of my body including my back as well. Most people think I am Norwegian walking , and the brighter colours are better than the wooden walking cane, or aluminium crutches.
    Just don’t let the world grind you down.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #184527
    Reply To: Medication to slow down MD

    Quite right, Mike, I too have used colourful crutches in the past, even those funky ferrules with the retractable spikes! I never very comfortable using them, and eventually stopped. The fall I had least week convinced me I couldn’t go on banging my head and getting lifted off the deck by passers by, and so am awaiting the delivery of two of the very walking poles you speak of. I have ordered Leki walking poles and with t-shaped handles for more support.

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #184534
    Reply To: Medication to slow down MD

    Just got cheap ones myself. Bought Eurohike. £10 for two. The thing I have found with them is that the rubber ends only last a few weeks and are expensive to replace if you buy the originals. Non originals last even less. Let us know if you find a good supplier of the rubber end. Not going to be using the for too much longer as I am struggling to stand up with my balance now too since I contracted my new condition.
    I started off using a monopod that I had for photography, which is all behind me since MD took away my ability to hold a camera.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #184542
    Reply To: Medication to slow down MD

    I guess a site like this is the business for replacement ferrules. https://www.rubberferrules.co.uk/

    I didn’t find the ferrules on my crutches wore out quickly, I suppose it depends on how hard you lean on them; I will only be keeping mine for balance as required, and not putting all my weight on them.

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #184561
    Reply To: Medication to slow down MD

    Just thought I would chime in regards physio

    Its true not all MDs benefit from physio or forced exercises in aim to create muscle bulk. It all depends on the condition. If you’ve got like myself an MD that is deficiency in a particular protein that’s needed to repair then overdoing can have some issues but what is widely supported across all the MDs that physio and passive physio does maintain the tendon lengths therefore maintaining movement and mobility. Being inactive or not stretching can cause the tendons to shorten and make walking, standing or bending more troublesome. Many of us see a notable difference in strength after prolonged bed rest during illness.

    Lower limb specialists (Orthotics) that supply ankle and foot supports may be able to assist in insoles or supports that may offer some support to mobility.

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #184586
    Reply To: Medication to slow down MD

    I have found my physio invaluable in keeping me going. I am lucky as I go to the Neuromuscular Centre in Cheshire for treatment each month, so I know that it is built around knowledge of my condition, FHSD. I have to stop overnight but the cost is well worth the benefit. I found our local physios had no understanding of what was needed and I was alllowed only one treatment.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #184595
    Reply To: Medication to slow down MD

    Do you know if patients in Scotland can be referred to the Neuromuscular Centre in Newcastle? I am definitely going to ask my neurologist when next I have my annual review.

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #184625
    Reply To: Medication to slow down MD

    Ranald, You could ask to be referred to (PDRU) Physically Disabled Rehab unit at the Queen Elizabeth in Glasgow. This unit offers a block of focused physio and assessments by other departments like social work, OT, orthortics, speech therapy (salt)etc.

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
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