Forum Replies Created
January 8, 2018 at 5:42 pm #153767Reply To: Recently diagnosed
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.
TonyJanuary 8, 2018 at 5:26 pm #153766Reply To: Newcastle Specialist
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.
TonyAugust 17, 2017 at 6:59 pm #151112Reply To: KAFO Advice
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 footdropJanuary 8, 2017 at 2:09 pm #146262Reply To: husband w/ beckers muscular dystrophy
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.
TonyOctober 26, 2016 at 12:35 pm #143412Reply To: Newly diagnosed
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 ?August 13, 2016 at 9:29 am #136270Reply To: Hello from new poster with Myofibrillar Myopathy
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.July 28, 2016 at 10:01 am #135536Reply 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.July 27, 2016 at 8:53 am #135475Reply To: Newly diagnosed
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.
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