Viewing 20 posts - 1 through 20 (of 22 total)
  • #75549
    help and advice

    My brother is 37 and has muscular dystrophy and was wanting done advice….i have a 9 year old son and am really really worried recently. .He has problems running and recently has been complaining of foot pain. .We  are currently seeing a paediatric consultant. Is there a chance my son could have MD even though it’s only my brother in our family that had MD.any advice greatly received. Regards 
    Matt

    mattsprooles
    Participant
    Posts: 1
    Joined: 26/03/2015
    #96397
    Re: help and advice

    Hi Matt, welcome to TalkMD! I can understand you are concerned and it is important you are able to get the right information and get some answers. I would suggest you might be able to ask your GP to be referred to a geneticist. You need some specialist help. There are some factsheets produced by MDUK about genetics and other subjects and please keep in touch and feel free to share your thoughts, ask questions. Does your brother have a consultant or go to a specialist centre?

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #96398
    Re: help and advice

    Thanks for your message.

    Sorry you have these worries.

    As has been said there is no easy answer as genetics is a very specialised field.

    There are many types of M.D. and that is also very complicated. If your GP or
    any other specialist thought MD was the most likely option they would
    probably have referred you to the Neurology department already. There might
    well be simple explanations at this stage.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #96399
    Re: help and advice OPMD

    Hello, please can you possibly help?? I was diagnosed last year with opmd, I am 44 years old & it affects my swallowing but for the last 6 months approx. my legs have become very achy & sometimes painful this is constant every day sometimes I have to crawl up the stairs as my left leg cannot manage it.
    I did see my neurologist 2 weeks ago & he has referred me for a mri scan but he said “muscular dystrophy does not cause pain” is this true?

    as my condition is a rare form of md how can I find out more information as I have searched websites but I do need some answers as when I went to see him it was like he was dismissing my problem.
    please help?
    Alison

    Alison
    Participant
    Posts: 6
    Joined: 27/05/2014
    #96400
    Re: help and advice

    Hi

    Well pain is a subjective word and most people imagine pain as stabbing or throbbing or aching etc. It took me years to put a word to muscle ‘pain’ by using the word cramp (incorrectly but close) and to the people who didn’t understand how my MD affects me I tell them to stand arms outstretched front with a phone book in their hands and hold it there for as long as they can. the point where they can’t hold it any more is the feeling I get in all my muscles after a few repetitions of something, or lifting a pan, or holding a kettle, or writing with a pen, or etc etc.

    I’m sure I can only find the same information on your disease as you have already but my consultant did tell me to search for information on health issues by using google scholar. It gets better returns.

    https://scholar.google.co.uk/scholar?hl=en&q=Oculopharyngeal+muscular+dystrophy&btnG=&as_sdt=1%2C5&as_sdtp=

    Hope this helps a little

    :)

    weeble
    Participant
    Posts: 44
    Joined: 23/09/2010
    #96401
    Re: help and advice

    Hello Alison :waving:

    Yes, MD can cause pain – it has to, the way we stretch, strain and work ourselves to do every day things with muscles working harder because they are weaker, there is pain. People experience tightening, cramp, pins and needles sensations. Saying MD is painless is like saying running a marathon isn’t exhausting :bang:

    You’re not going mad :yes:

    You may find speaking to your local Advocacy Ambassador helpful – these are volunteers with MD who are a hub of general information and help, a sympathetic ear with some muscle behind them, if you like.

    There are also Care Advisirs Their training backgrounds include nursing, social care, physiotherapy and occupational therapy. They work with statutory service providers, education authorities and other professionals to advise, support and best meet the needs of people with muscular dystrophy and related neuromuscular dystrophy.

    There is also a specific support group for people with OPMD who can offer more specific support and help

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    #96402
    Re: help and advice

    thank you so much for your advice it is very helpful. Alison x

    Alison
    Participant
    Posts: 6
    Joined: 27/05/2014
    #96403
    Re: help and advice

    hi i’m stephen from rotherham s.yorkshire im trying to find other people with limb girdle md near me if there is enough of us close by then we could start a group

    giddy450
    Participant
    Posts: 2
    Joined: 19/06/2015
    #96404
    Re: help and advice

    hi does anyone know if opmd is classed as a disability? I have recently applied for personal independence payment due to my constant leg pains. I have been prescribed strong painkillers but to no avail.

    Alison
    Participant
    Posts: 6
    Joined: 27/05/2014
    #96405
    Re: help and advice

    @alison wrote:

    hi does anyone know if opmd is classed as a disability? I have recently applied for personal independence payment due to my constant leg pains. I have been prescribed strong painkillers but to no avail.

    The type of condition rarely affects entitlement to PIP, it really comes down to how the condition affects your ability to move/live and how effectively you put that on the form and how well the processor interprets what you put, bearing in mind they have zero knowledge of any disability.

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    #96406
    Re: my son is 3 years old he is dmd patient

    http://www.dmdyogictherapy.com
    I hd gone through dis site n I talked wid Mr patel who is in US.He can giv assurity that my son will not b on wheel chair n live long n healthy life..as per him he is giving ayurvedic medicine..is it possible sir? He strictly told me to stop steroids by slowly …my son has started steroids from 1 month..pls advise me…I m very confuse…pls help me

    ritivora2008
    Participant
    Posts: 4
    Joined: 31/07/2015
    #96407
    Re: my son is 3 years old he is dmd patient

    @ritivora2008 wrote:

    http://www.dmdyogictherapy.com
    I hd gone through dis site n I talked wid Mr patel who is in US.He can giv assurity that my son will not b on wheel chair n live long n healthy life..as per him he is giving ayurvedic medicine..is it possible sir? He strictly told me to stop steroids by slowly …my son has started steroids from 1 month..pls advise me…I m very confuse…pls help me

    Hello ritivora,

    I can understand your feeling confused. Keep in mind the one true fact that the world knows today, there are no known cures for DMD, anyone trying to play on your emotions that there is, is someone to avoid. There are some medical treatments that help slow it, help prolong a long and healthy life, etc, and these your medical team will be aware of, but as yet there is nothing to stop it.

    I did a little looking into that website and company which is in Gujarat in India, I am not sure where the American connection comes in. I also found an independent article on Yoga for people with DMD which you might find a useful read Effects of Yoga …..

    Let me see if I can get someone from our Head Office here in the UK to have a look into it for you, this may take a little while though.

    Any complimentary practices should be taken under advisement and not in place of medically proven/prescribed practices.

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    #96408
    Re: help and advice

    Thnx a lot for d reply sir…one more thing is dr patel gave me a number of Canada(0016477262026) dr monal may be his daughter. I HV talked with her. She told me after 5 years of our medicine deseise will not come again..they r giving 1 month medicine (natural herbs ark which is use with honey) in rs.2300/-(INR) per month and in India(Baroda) at their firm patient has to do exercise 20 hrs day n tie something on leg I don’t know exactly wt is d process bt for 1n 1/2 years exercise is must..if they r doing for money then the amount is affordable right!!! Its actual or fake…CNT judge…its decision of life of my son…I CNT tk it easily..pls find out for me its really cure patient or not… Yestrde I HV asked dr patel to give me contact number of patients whom they cured on whatsapp BT he didn’t reply till…I wnt not to show this massage on panel as dr’s persnl number is given pls reply me on my prsnl email I’d ritivora2008@gmail.com

    ritivora2008
    Participant
    Posts: 4
    Joined: 31/07/2015
    #96409
    Re: help and advice

    Cycle of the exercises they give and for each cycle they charge 23000 rs. 9 cycles DMD patient has to cmplt.only at India center

    ritivora2008
    Participant
    Posts: 4
    Joined: 31/07/2015
    #96410
    Re: help and advice

    Hello again Ritivora

    Sorry, but answering to personal emails is not an option from the forum – when our Head Office have taken a look they might contact you direct. It is important other people can read your experience and replies to learn from it as well.

    However, to reply to your latest post. I am worried about what this dmdyogictherapy organisation is asking of you. If they are unwilling to put you in contact with patients they have treated and supposedly ‘cured’, it is starting to sound a little irregular. I am most concerned that they are telling you that the disease will not come back, all MD’s are not like a virus or an infection; it is genetic and cannot be reversed or gotten rid of in any way.

    As I said before, exercise, physiotherapy, yoga can help stretch muscles and keep them active and useful a little longer, but these too can sometimes cause harm, which is why they should be taken under advisement of a medical professional.

    Does your son see a doctor or consultant for his DMD? Maybe you should ask them about this form of treatment, maybe your physician can talk to Dr Patel/Dr Monal, Doctor-to-Doctor about the benefits of what they propose?

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    #96411
    Re: help and advice

    Thnx for the reply sir..yes we r in continoues touch with our nuorologist who is one of the best dr of our city..he strictly advise us not to giv any medicine without my permission. & daily going to physiotherapy center ..By d way helopathy and ayurved both r different ..our dr cnt suggest ayurved..i m asking u in dis forum as i wnt to kno d authenticity of dat site as i hv prescribe in my prev mail.

    ritivora2008
    Participant
    Posts: 4
    Joined: 31/07/2015
    #96412
    Re: help and advice

    Hello Ritivora,

    I have asked the research team at the head office for a response and will get back to you asap.

    Best wishes,

    Alexa

    Muscular Dystrophy UK staff member

    Alexa Follen
    Moderator
    Posts: 32
    Joined: 12/05/2015
    #96413
    Re: help and advice

    Hello Ritvora2008,

    I heard back from the research team in the office and they agree with AMGMOD. Please continue with your prescribed medication. There are no trials on ayurvedic which have shown to have any impact on MD or NM conditions. Please stay in touch with us and keep us updated.

    Best wishes,

    Alexa

    Muscular Dystrophy UK staff member

    Alexa Follen
    Moderator
    Posts: 32
    Joined: 12/05/2015
    #96414
    Re: help and advice

    I was diagnosed with Becker-type myotonia which in reading about it, it says it does not get progressively worse but mine is getting worse, the stiffness and muscle contracting is non stop and cramping and also have been getting weaker in arm strength and leg strength but am not experiencing any wasting as this type of muscular problem doesn’t involve muscle wasting, am wondering if there could be a dual diagnosis that needs looked at, I am at my wits end with this, nothing seems to help except for pain medicine for some relief of the aching that occurs from all the muscle contracting. Is there anyone with same issue. I do have diabetes and heart problem, a blockage and colon problems. Also, I have had more falls due to legs going stiff on me while walking and as I am getting older, it is scary that I’ll break my head open or break a bone with these falls. Thank you for any help or advice you can give me, I sincerely appreciate it as I feel so alone with this right now.

    josey888
    Participant
    Posts: 2
    Joined: 04/08/2015
    #96415
    Re: help and advice

    Hi josey888

    I’m glad you feel you can share with us your concerns, it is not good to feel alone. I understand you fear and frustration very well. I for one am much better at dealing with my condition if I can understand it or know some of what to expect.

    What sort of health professional support do you have? If have regular appointments with a consultant I’d definitely explain what you are experiencing. Do you have anything like hydrotherapy? I know these services are sometimes difficult to access but it could be beneficial if you don’t already have it. On a more practical note, Occupational Therapy might be able to advise on ways to make things easier or your environment safer – the fear of falling is not easy to live with let alone the possibility that you might to yourself serious harm.

    We are here of you want to vent your frustrations, ask questions or bounce ideas off us. I am still looking for answers, the company of the guys and gals on our forum do make it an easier search!

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
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