Viewing 19 posts - 1 through 19 (of 19 total)
  • #148063
    Recently diagnosed

    I am currently going through the testing process for a weakness in my left thigh. I 1st noticed there was something wrong when I was on holiday in Las Vegas. I was really struggling to keep up walking with my wife, climbing stairs and I physically cant run anymore. Now I was quite fit, I played football every week and attended spin classes in my gym 2 -3 times a week. This just hit me like a tonne of bricks and now I struggle to walk at any great pace or length. My doctor reffered me to see an Neurologist who took blood tests and a muscle biopsy and the results have come back that I have a Chronic Myopathy with dystrophic features. He cant pinpoint the exact diagnosis so has reffered me to a muscle disease specialist who I am currently waiting on an appointment to see. Its frustrating being in limbo with an exact diagnosis but I am managing ok. I am still working fulltime, I work in an office so I can manage without over exerting myself at the minute. I have been looking for some kind of group to read about other people experiences and share my own.

    bufc
    Participant
    Posts: 0
    Joined: 02/03/2017
    #148073
    Reply To: Recently diagnosed

    Welcome bufc!!

    You have come to the right place :)

    Let us know if there’s anything particular that you can’t find on any threads. We are currently without a search facility so one of us mods can help.

    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
    #148075
    Reply To: Recently diagnosed

    Welcome to the forum.

    I too work in an office and can be a great environment to adapt around changing needs.

    Have you heard of Access to WOrk. this is a GOV scheme that supports people to work by providing travel or workplace aids and adaptations. In my work. electric door closer have been provided. a wheelchair. and travel to work have been fully or part funded

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

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #148101
    Reply To: Recently diagnosed

    Hello and welcome bufc, you have come to the right place to find 1suport, udnerstanding and help with your problems. Cat, as ever, is right on the ball by suggesting you contaact the Access to Work people. They will be essential in keeping you at work by helping with any changes that may become necessary. Please may I also add that you should not try to keep looking back at what you could do. look forward to what you can do and exploit that to the maximum.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #148115
    Reply To: Recently diagnosed

    Thank you all for your kind words.
    Its been a shock to me since Ive been told that I have this condition. My work (I work within the NHS) have been excellent in supporting me so far. I also have a fantastic wife who supports me to the hilt.

    bufc
    Participant
    Posts: 0
    Joined: 02/03/2017
    #148116
    Reply To: Recently diagnosed

    I too worked for the NHS, I am glad you work for one of the better ones. Make sure you keep Occy Health involved.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #148827
    Reply To: Recently diagnosed

    I have been recently diagnosed as well but fortunately I’m a financial advisor with clints who work for the NHS, they are the best organisation I’ve come across for support for staff, so although it’s tough financially you will be fine. Good luck

    chrisp1974
    Participant
    Posts: 0
    Joined: 19/11/2016
    #148828
    Reply To: Recently diagnosed

    Welcome Chrisp. good to have you on board.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #153720
    Reply To: Recently diagnosed

    Hi not really to sure where to start but my daughter is 22months old we was told on the 7th of July 2017 she has muscular dystrophy but had to have bloods done and sent off for checks they came back 21st of December she has congenital muscular dystrophy I am trying so hard to be strong but I can’t seem to be fo her I cry all the time can’t stop thinking about it but what hurts the up most is my perfect beautiful baby girl won’t ever be able to walk by the sound of it she can’t crawl do tummy time weight bare roll nothing :cry: I feel like I am greaving for a child that I won’t have now and trying to come to terms with our new path in life I just can’t stop thinking she won’t ever walk and it’s so heartbreaking because she now asks me “walk mummy walk” and she can’t :| well just thought I would share a small part of our life right now and try find other people with the same condition :new:

    Beautifulbonnie
    Participant
    Posts: 0
    Joined: 06/01/2018
    #153722
    Reply To: Recently diagnosed

    Hello and welcome to the forum. I am certain others will chip in to offer help and advice.
    My I start by saying that you must not overthink what is happening here. You must gather together as uch information as you can, and of course, and possibly most importantly, seek the advice of your neurologist who will be able to advise you as to what may happen and how to deal with it. You might also want to have a look here https://www.mda.org/disease/congenital-muscular-dystrophy/research, which gives, in mu opinion, an optimistic picture for future treatment. Clearly you will also need to seek advice from your physiotherapists as to how best to get her as mobile as possible, and Occupational Therapists for advice on mobility and other help as home and elsewhere.
    One of my own children was diagnosed with MD very early on in life (and from that I was also diagnosed), and he has gone on to make a great life for himself, even paying off the mortgage on his house by his mid thirties. Your beautiful little girl will always be your beautiful girl, and you can best help her, yes by being strong, but also getting all the help you can to fight this. There is much help and support out there, you are not alone.

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #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
    Participant
    Posts: 0
    Joined: 23/07/2016
    #153802
    Reply To: Recently diagnosed

    Hello Beautifulbonnie, I’m very sorry to hear about your wee lass’ diagnosis. Please try as hard as you can to keep from thinking too far ahead; easy to say I know.
    I hope will keep in touch with us all here, it can be cathartic to express your feelings on paper, so to speak. Have you though about keeping a blog?

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #153814
    Reply To: Recently diagnosed

    Hi I’m a 28 year old man recently diagnosed with fshd. Struggled for years physically and mentally in silence. I got the courage to seek help when meeting a special person although my negativity with life is taking its toll on her. I’m always angry with my worsening condition, I’m currently on the sick knowing I can’t go back to my physical job. I just don’t know how things are going to get better..i would be appreciative of any advice. Thanks

    Jack
    Participant
    Posts: 0
    Joined: 05/01/2018
    #155172
    Reply To: Recently diagnosed

    Hi guys

    I’m currently awaiting a diagnosis and just about to qualify from university as a Physio going into my first job,so the prospect of this is daunting considering the diagnosis I’m waiting for. My diagnosis has been coming for about 7/8 months now and I first noticed issues going up stairs, getting on and off the floor and getting up from a slow chair/seat and can’t remeber the last time I managed a squat of any sort in the gym.
    I’m being referred for genetic testing at Newcastle and wondered if anyone has had any experience of this or how long it takes from start to finish? I’m probably being impatient but I’m desperate for some answers now.

    CMC89
    Participant
    Posts: 0
    Joined: 14/03/2018
    #155244
    Reply To: Recently diagnosed

    Cmc89… I was referred to Newcastle in December 2017 and had a full diagnosis within 2 months, hope that’s reassuring for ya as i know how difficult it can be not knowing. The guys up there are terrific so hold tight dude.

    Jack
    Participant
    Posts: 0
    Joined: 05/01/2018
    #155275
    Reply To: Recently diagnosed

    CMC89, can I please suggest that you may first look towards your own experience and training and see what help you can give yourself. I will be forever grateful to my physio for all the work they have done with me over the years, and I know that without them I would be in a much worse place right now. The diagnosis will of course give you more of a handle on what condition you have. But such a diagnosis, to be correct, will take some time. In my own case, and that of all my children, it was around three months to get the final DNA analysis back with a diagnosis. Perhaps you may then feel you can plan more that you can now. It would be wrong to assume that your variation of MD will follow a particular path. it will not. We are all individuals and the path of the condition will be unique to you. there are common factors of course, specifically the weakness of which you speak. In the meantime then try and deal with the symptoms as best you can, using your experience, training and contacts.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #155276
    Reply To: Recently diagnosed

    Hello and welcome Jack. I am sure you will find help and support here as I have done. I have had the effects of FHSD now for over fifteen years. I lost two jobs as a consequence and through retraining I am now a drone pilot. What I am trying to say to you is I can appreciate how dark it can be for you, and how bad you may think it can go but that are always alternatives you have to search for them. It is a struggle to live with the condition if you let it, and living with your condition can be so much easier if you have that “special person” on your side. Remember she would not be there if she did not want to be , and she would not be there if she did not want to help you. It takes a very special lady to take on that latter role. So embrace the help she can give you physically and mentally. Let her give you the support you clearly need and share your problems with her, it will help her to feel so much more part of your life instead of being shut out from some of it. Like it or not your FHSD is and will be part of you as mine is with me. after all this time it does still make me feel very down and dark from time to time as I get sick and tired of being sick and tired. But then again there are compensations. i have met many people I never would have done. I have found a new career. I can do two wheel turns on my scooter, and many other things. Along with many others on here, i am more than happy to help you with whatever questions you may have, most of us have been there before you. There is light at the end of the tunnel, you have to let your special person guide take you down towards it.

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #156899
    Reply To: Recently diagnosed

    Its been a while since I posted on here. Its been 15 months since I was told I have Myopathy but I am.
    no further forward. Ive saw my nuerologist twice in the last year but im really no further forward. I still dont have an exact diagnosis and my next appointment has been put back until October, it was orginally supposed to be August. I have deteriotated in the last few months, my right leg has developed a slight weakness and I am having problems with my jaw locking and my strenth in my mouth when chewing. I am currently off work, ive been off for the last few weeks. I just dont have the strength in me to go to work at the minute. I’ve felt like this before and a few weeks rest helped, hopefully it will do the trick this time as well. I am worried about my long term future in work. I work in the NHS and have a super annuation pension but from reading about ill health retirement its all way over my head. Has anyone any experience of the procedure with superan pension and ill health retirement?

    bufc
    Participant
    Posts: 0
    Joined: 02/03/2017
    #156913
    Reply To: Recently diagnosed

    Hello BUFC. I have had just that experience. For me it was not too pleasant but that was just the hospital I worked for as they fought tooth and nail to stop me getting ill health retirement. Most are not like that. Your super ann scheme will depend on when you have joined the NHS and what decisions you have made since about your pension. For those who have been in under the ‘old’ scheme, you can retire on ill health will full pension which is usually around half your final salary. If you are not in the final salary scheme then I would urge you to contact NHS Pensions https://www.nhsbsa.nhs.uk/nhs-pensions, who can give you more detail. I would not contact HR as they will immediately flag you up as someone who may be leaving rather than someone who needs support. If you are in a union, talk to your rep and get support from them. Talk to Occy Health and get them to tell you their views about you being able to continue working as it is their view that will be crucial come the time for a pension application. Again do not talk to them about medical retirement just ask about your medical future and work. Ask NHS Pensions about applying for a pension too and how you go about it. Needless to say there will be huge forms to fill out asking for all kinds of information and remember it will never be enough.There will also be other questions and need for more information, but getting Occy health on your side will limit that for you. Mine took two years to get approved. I cannot say if it is normal or not, but be prepared for it taking a long time. Talk to those people I have mentioned and you should then have a much better idea as to what you can do. If not please come back here and we can try and help as well.
    For me it was the best thing that has happened to me. The simple removal of stress was almost palpable and contributed to improving my health at the time.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
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