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  • #153767
    Reply To: Recently diagnosed

    Hi bufc,

    I can understand your situation. I too was fit and enjoyed many sports until a weakness occurred in my right leg making it difficult to walk and manage stairs. Every person is different on its progression but it came as a bolt out of the blue. Having being under a consultant at Cambridge for the last two years, an initial diagnosis is that of Myofibrila Myopathy. I have just been referred to Newcastle for a second opinion. As this is a relatively new to me, if I can help in any way in managing your situation, with useful tips and advice, please let me know.
    Tony

    Tony
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    #153766
    Reply To: Newcastle Specialist

    Thanks Weebie,

    Can you advise, when you visited, did you stay overnight anywhere? The reason for asking is that I will travel from Peterborough and I would prefer an overnight stay but need disabled facilities at a hotel. Any recommendations would be welcome.
    Regards,
    Tony

    Tony
    Participant
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    Joined: 23/07/2016
    #151112
    Reply To: KAFO Advice

    Hi Cat
    My main interest is being able to walk. I used to be able to walk using crutches and then had to use a frame but in the last 3 months the weakness has progressed to the point that my knees won’t lock out now. I also used foot orthotics to counter footdrop

    Tony
    Participant
    Posts: 0
    Joined: 23/07/2016
    #146262
    Reply To: husband w/ beckers muscular dystrophy

    Hi Snowball
    I understand what you are feeling. It’s about 18 months since I lost my mobility at 50 years of age. I too wanted so much more from life with my wife after our children have grown up. My wife is now my carer and without her life would not be worthwhile. She copes with the situation far better than I and keeps me motivated. Your husband needs you to remain strong and I am sure he will cope as long as you are there. I have found that rather than worrying about what you cannot do think of the things you can do together it seems to work most of the time for me. Don’t give up keep going and I always say to myself that there will always be someone worse off than me and when you look around the world there is.
    Tony

    Tony
    Participant
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    Joined: 23/07/2016
    #143412
    Reply To: Newly diagnosed

    Hi everyone
    Not been on for a while and since then have had a course of ivg it at Cambridge as a trial to ease the symptoms of my myofibrilar myopathy. It’s been 3 weeks and no improvement as of yet. It was only a trial so nothing ventured nothing gained ! Just wondering if anyone else out there has had this treatment ?

    Tony
    Participant
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    Joined: 23/07/2016
    #136270
    Reply To: Hello from new poster with Myofibrillar Myopathy

    Hi Adrian
    I too have just been diagnosed with myofibrilar myopathy currently servere weakness in my legs resulting in walking with crutches on a good day but wheelchair bound more often than not.
    My condition began with a limp after walking with resulting foot drop. Within a year it progressed to very limited walking ability as stated above. My original diagnosis was polymyoitis but after stuffing me full of steroids the condition did not improve.
    After tissue biopsy my consultant confirmed condition.
    Still struggling to accept the situation after leading a active life but will no doubt get there.I am 52 years of age.

    Tony
    Participant
    Posts: 0
    Joined: 23/07/2016
    #136012
    Reply To: Newly diagnosed

    Hi everyone
    Has anyone tried any alternative medication or protein supplements which help on muscle gain etc. Just wondering if it helps conditions ?

    Tony
    Participant
    Posts: 0
    Joined: 23/07/2016
    #135536
    Reply To: Newly diagnosed

    Thanks for the reply.
    After many years of being able to do many sports and activities still finding it difficult to come to terms with the situation but I have a fantastic wife who, without her life would be unbearable so it’s a case if ” suck it and see ” and see where the future takes me.

    Tony
    Participant
    Posts: 0
    Joined: 23/07/2016
    #135475
    Reply To: Newly diagnosed

    Hi

    All I know is that my consultant at Cambridge has indicated MD she has not specified a particular type as of yet.the Initial diagnosis was polymyoitis.i have had a muscle biopsy which was inconclusive of any inflammation so she has sent it off to Newcastle for a second opinion. The deterioration of walking was dramatic, within three months I went from walking to waddling and servere weakness in my legs resulting in limited steps of 5_6
    Just waiting on results from Newcastle which has taken 4 months so far.
    I am not a social media person so do not have a Facebook account.

    Tony
    Participant
    Posts: 0
    Joined: 23/07/2016
    #135360
    Reply To: Newly diagnosed

    Many Thanks. I will look them out

    Tony
    Participant
    Posts: 0
    Joined: 23/07/2016
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