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  • #184684
    Hello – looking for advice

    Hi – I’m Phil. Over the past year, I noticed that I was losing strength in my legs and I was finding it difficult to walk up steps/stairs. I had bloods done at the GPS and all results were normal so I was referred to the neurology department at the local hospital. After an examination I was sent for MRI scan, nerve tests (the one with needles) and a blood test for creatine (sorry, I don’t know the medical terms very well).
    I had the follow up appointment yesterday – I was very nervous as I was expecting some type of life-changing news. The consultant told me that all of the tests were normal and that they are none the wiser. He said that I would now be referred to be investigated for ‘rarer diseases’. I prompted him to give examples – he said ‘metabolic myopathy’. I told him that I intended to start exercising to try to gain some strength back which he said would be fine (internet research is now telling me that it may be a bad idea, particularly strength training which is what I was intending to do). As I left, I asked him if the creatine blood test was also in the normal range and he said it was slightly high but that would be expected with a person who has signs of muscle wastage.
    So – all in all, I’m a bit disappointed. The consultant did seem a little vague throughout. After waiting for 3 months to find something out, I’m none the wiser. This does seems to be a common thing from what I’ve picked up looking at a few forum posts.
    After having a look at the metabolic myopathy symptoms etc online, it does seem to fit (I’m aware that there are numerous types). One thing that fits is that I become breathless if I start walking quickly or doing something that makes my heart beat a little faster – but I then recover in a very short time (it is strange and unsettling). I recently took my son to a football match and we had to walk a mile to the stadium – much of this mile was up a very, very slight incline. By the time that we reached the stadium I was as exhausted as I have ever felt. I sat on a bench and within 5 minutes, I was completely recovered.
    At the moment, my strategy (perhaps coping strategy as I feel a need to be doing something) is to clean up my diet to try and lose some weight (I need to lose about 20 pounds or so as I have gained over the past year) and to eliminate alcohol completely. I intend to stay active but not exercise as such – the information I’ve read has said that exercise plans need to be bespoke to the diagnosis that a person receives.

    Does anyone have any advice for me – especially on the way forward from here in terms of lifestyle/exercise etc?

    Many thanks in advance.

    Phil

    YNWA
    Participant
    Posts: 0
    Joined: 18/01/2020
    #184685
    Reply To: Hello – looking for advice

    Hello and welcome Phil. Your journey, so far, is not that much different to most of us on here. Might I say that finding the correct diagnosis, especially with anything MD related, can be difficult, complex, time consuming and maybe in the longterm, fruitless. There are so many varieties, and sub varieties, and even they may not fit the “normal” criteria. Your consultant has been doing all the right things, and your thoughts about losing weight are absolutely the correct thing to do. Any excess weight with any form of muscle weakness, is never going to help you.I would urge you to seek the opinion of a physiotherapist, preferably one from the Neuromuscular Centre in Winsford, who can help you with you exercise in a controlled way. For my, they have been an immense help. Please try and avoid Mr Google unless you have the clinical knowledge to deal with what you see. It can be very misleading and even dangerous for many people.
    Please do not feel your consultant is being vague. He, is probably not yet sure as to what you may have. Any clinician will not tell you that you have a certain condition, especially something like MD, until they have a lot more information. It would be wrong for you and also wrong for him too to say anything.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #184753
    Reply To: Hello – looking for advice

    Thanks for your advice, Mike. – it has made me think of things differently. After having a few days to reflect I feel a little better about the situation now. I’ve set about altering the only thing in my control which is my weight.
    Thanks again
    Phil

    YNWA
    Participant
    Posts: 0
    Joined: 18/01/2020
    #184817
    Reply To: Hello – looking for advice

    Don’t be surprised if the next steps are to have a muscle biopsy done, and a blood test. These seem to be the common ways that they find evidence of muscle wasting diseases. I also wouldn’t worry too much; you’ll get an answer eventually.

    JonoWhitehead JonoWhitehead
    Participant
    Posts: 0
    Joined: 05/09/2019
    #184820
    Reply To: Hello – looking for advice

    Thanks for your advice. I’ll wait and see what happen in terms of testing – I’m currently concentrating on dealing with the physical changes and trying not to obsess about a diagnosis.
    Thanks again
    Phil

    YNWA
    Participant
    Posts: 0
    Joined: 18/01/2020
    #184912
    Reply To: Hello – looking for advice

    Welcome to the forum Phil.

    Very pleased to see your approach to this by dealing with the physical
    issues. I made a big effort a few years ago and lost 30 pounds and
    am so glad I did. It helps with the MD and in numerous other
    ways as well.

    Diagnosis can be simple but for many it is a long process. There
    are many different forms of Muscular Dystrophy with very different
    degrees of severity and progress. People often spend a lot
    of time worrying for no reason.

    Whatever the diagnosis there is a lot of support and information that can help.

    Thanks for posting.

    "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
    #185064
    Reply To: Hello – looking for advice

    As well as seeking advice from specialist neuromuscular services like physio, you may want to look up your local muscle group.

    A list of Local muscle groups

    It can help to talk with others, even if you don’t have a diagnosis yet, you might find it is of benefit.

    Keep in touch.

    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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