Viewing 7 posts - 1 through 7 (of 7 total)
  • #163094
    Diganosed – MD DM1

    Hello All,

    I suppose I am fairly recently diagnosed with MD DM1. Went to the doctor’s about a year ago about my hands getting stuck in position when gripping, finally referred to a neurologist and after I mentioned that I had cataract surgery (unusual for being a 35 year old) he put the link together and after seeing a geneticist, diagnosis was confirmed.

    Luckily I have the support of my lovely wife, but I find it easy to relate a lot of symptoms to MD, whether they are or not. Obviously the muscle stiffness, tiredness and balance issues are obvious, but being on other forums a few other symptoms have come up.

    For instance, these days when I get the hiccups they do not go away – last time I had them for 48 hours straight! What about flatulence? I suffer from IBS so I thought that always down to that, but obvious gut problems can be attributed to MD too. The diaphragm and sphincter are muscles after all.

    What do you guys do regarding alcohol? I still drink, just not as frequently as I’ve had a couple of bad falls after drinking.

    Also, what about just apathy and lack of motivation? Is that just me or down to MD?

    Any help would be appreciated!

    craig-dickson
    Participant
    Posts: 0
    Joined: 19/10/2018
    #163109
    Reply To: Diganosed – MD DM1

    Hello and welcome Craig.An interesting set of questions there. As for the “gut problems” always remember you can have more than one condition at once, so you do not necessarily have them because of MD, it is possible but not definitive. I am sure flatulence is not s symptom that has occurred on the forum before.
    Alcohol is not something I personally worry about. I am on so many meds now, most of which interact with alcohol that I do not bother with it. I am also somewhat surprised that you drink it when considering your IBS. Does it not make it worse for you?
    Lack of motivation/apathy can happen to anyone. i will happily admit that it struck me hard when I lost both of my jobs as a result of my MD(I have FHSD). I thus had to get myself out of the doldrums and find something else to motivate me. Are you still working. I found that one of the greatest side effects of MD was the sense of being useless. Lost my jobs, and lost the ability to do many of the things that I was used to doing as a man. It can easily lead to depression if you are not careful. Have you any hobbies or interests to develop yourself?

    Mike

    SO many love songs, so little love.

    embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #163140
    Reply To: Diganosed – MD DM1

    Yes I am still working, been in the same job for 5 years at the moment, I have always worked. I don’t think the MD really negatively affects me at work (not yet anyway). It is an office job so no hard labour :-)

    Yes, alcohol does exacerbate the IBS symptoms, but it just means I allocate a few hours the next morning for trips to the bathroom and Imodium works pretty well for me.

    craig-dickson
    Participant
    Posts: 0
    Joined: 19/10/2018
    #163155
    Reply To: Diganosed – MD DM1

    :welcome:

    Flatulence and other Misc stomach digestion or swallow issues are very much part of MD although can also as always just be something else that everyone gets. People with MD can suffer from slow sluggish bowel motility so understandably if ‘items’ hang around too long excess gas/good bacteria is made in effort to break it down. Which is essentially what IBS is.

    Hiccups in myself is a reflex action normally prelude to acid re-flux due to bad posture.

    Drinking can make worse especially carbonated soft or alcoholic drinks. Everyone is different I find the occasional Brand or gin helps the stomach process. All in moderation.

    Your GP should be able to sort you out with something for the hiccups. They are a sign of digestion problems. and some organ issues in very rare cases. The most likely cause is your stomach isnt closing properly and letting some stomach acid flash back and irritating the throat. the body closes windpipe to protect the lungs and causes the hiccup sound effect.

    Have you tried pro biotic for the gas?

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

    catatude
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #163161
    Reply To: Diganosed – MD DM1

    Hi all Anybody want to chat with me?
    I am 48 just been diagnosed coming to terms but shocked how rapidly I am worsening

    Irishcolin
    Participant
    Posts: 0
    Joined: 23/10/2018
    #163254
    Reply To: Diganosed – MD DM1

    :welcome: Irish Colin

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

    catatude
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #163268
    Reply To: Diganosed – MD DM1

    Hello Irish Colin, welcome to the forum. Lots of folk on here would be more than happy to chat with you. Please let us have some more details. What sort of MD have you got, are you facing any problems, how are you getting along etc.Most importantly what do you perceive is happening to you as your condition is worsening you say. What help are you getting?

    Mike

    SO many love songs, so little love.

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