Viewing 10 posts - 1 through 10 (of 10 total)
  • #159147
    New to the whole MD thing.

    Hello everyone, my name is Sean. I’m 18 and was recently diagnosed with Limb Girdle MD L2. As many of you may know, getting information online that relates to your own symptoms and experiences is hard sometimes. That’s the main reason I’m here, basically to see if there is anyone I can talk with that will understand! Thanks for the support and I hope to meet some amazing people on here!

    FlyFishingSean
    Participant
    Posts: 0
    Joined: 21/06/2018
    #159160
    Reply To: New to the whole MD thing.

    Welcome to the forum.

    Glad you have found us.

    There is a lot of information in our pages or
    just ask questions.

    There are people with your type of MD who will
    see your post when they next check in.

    "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
    #159168
    Reply To: New to the whole MD thing.

    :welcome: Sean

    Good to have you on board. Feel free to ask any questions, general or specific. Between us we have a lot of info and experiences to share and if there’s anything we don’t not know then we can signpost you in the right direction. There’s a lot of stuff on the internet but it can be difficult to wade through the relevant stuff and sift out what’s reliable too. It’s also a lot to process when you get a diagnosis and we all adapt at our own pace.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #159217
    Reply To: New to the whole MD thing.

    Hi welcome and look forward to your posts

    You might like the MDUK trailblazers 16 to 30 group on Facebook.

    Another good facebook group is called Living with MD but is not affiliated with MDUK

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

    catatude
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #164101
    Reply To: New to the whole MD thing.

    Hi my name is Julie and I’m a 32yr old mother. I have recently been diagnosed with limb girdle muscular dystrophy but I also have another rare type of muscular dystrophy that hasn’t been seen before apparently, I am still awaiting my test results from London but my shoulders are just horrendous, I have severe Scapula winging and I am in constant pain. I have also really struggled with my weight and can’t seen to keep weight on at all. I just find that people just don’t get how difficult it is sometimes and I’m just really struggling. Is there anyone else have similar issues?

    Julie86
    Participant
    Posts: 0
    Joined: 21/11/2018
    #164115
    Reply To: New to the whole MD thing.

    Hi Julie and welcome to talkmd

    I too have always struggled with maintaining weight. to be honest I didnt feel at all well either when on medication for pain which made me rapidly weight gain either. I then struggled to transfer.

    I have found a good balance by supplementing my diet with prescription milkshakes called ensure. Its more about getting the right nutrients rather than a focus on gaining weight. since starting the Ensure milkshakes I havent been troubled with colds.

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

    catatude
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #164246
    Reply To: New to the whole MD thing.

    Hi Julie,

    I have a form of DMD and I too have scapular winging although I’m not sure how severe it is relative to you. I sometimes get pain in my upper back between my shoulder blades and find it helps to lie on a flat surface and have someone press my shoulders back gently. I also get bruised if I sit on hard back chairs because my shoulder blades and spine are so prominent and they are getting pressed against the hard surface.

    I too have struggled with my weight. I’m now at a weight which I’m happy with and I’m managing to keep it stable. I think it is important to identify why you are having problems in this area and then that may help with a solution. For me it started with severe loss of appetite which was caused by a very low period in my life which was contributed to by lots of different things but my respiratory muscle weakness had progessed and I needed night ventilation and that was a big jigsaw piece. For me in general if I feel stressed or down I really lose my appetite and just eat less – the weight falls off and while it’s easy to see why it’s harder to make it stop!! It took a good while but I got the weight back by just making sure I was eating the highest calorie/protein versions of things eg swapping my milk to full cream, swapping my yoghurts to full fat, lashing in the butter when making scrambled eggs, using sauces on things eg I love full fat tzatziki with salmon, cheese sauce on veg etc etc snacks can be helpful too though I wasn’t very disciplined about having them myself. More recently my appetite has been fine but I have begun to experience difficulties with swallowing safely. This makes eating tiring and means I need to eat carefully. It has taken me a while to figure out what kinds of foods I can and can’t manage easily but now I’m on an even keel and can pretty consistently eat regular meals of sufficient quantity to keep my weight where I want it which is great. There are always strategies though. There are the supplement drinks if needed and even top up with a feeding tube. I was considering that quite seriously but feel happy where I am at the moment so it’s on the back burner but I do find it good to know that for every problem there is always some kind of workaround – at least that has been my experience.

    Elizabeth

    Ailsa
    Participant
    Posts: 17
    Joined: 09/12/2011
    #164309
    Reply To: New to the whole MD thing.

    Hi guys sorry for the late reply, things are hectic with a toddler.
    I have taken the ensure milkshakes before but like you Elizabeth when I’m feeling really down my appetite is just non existent and I just don’t see the point. Myself and my partner are going through a really rough time just now which isn’t helping either. My scapula winging is awful I look like I have actual wings, my bra straps get stuck round my blades all the time, I’m in constant pain in this area and the only thing that I have found that helps with the pain is marijuana. I know there is the whole taboo with it but it doesn’t give u the awful side effects that pills do and it helps increase my appetite and helps me relax without the pain. I am hoping to get surgery to help secure my shoulder blades but still waiting to hear back from a muscle specialist regarding this. Did you find that when you try and explain to people how you are feeling and the tiredness they just don’t understand?

    Julie86
    Participant
    Posts: 0
    Joined: 21/11/2018
    #164371
    Reply To: New to the whole MD thing.

    Julie please do not worry about marijuana. If it works and helps, never apologise for that because you will not find a queue of people offering a replacement. I started using cannabis to relive the pain which I have all over my body. It worked, taking most of the pain, and my appetite away. From there I have moved on to medical cannabis which does the same thing but tastes, well, not very nice. You are clearly in touch with medical specialists about your condition and they will clearly monitor you and flag up anything that might be going amiss, and using the marijuana gives you just a little more space in your mind to deal with other problems.
    I do agree with you when you say people do not understand what you are going through, possibly because the mention of MD does not trigger any response in many, including doctors as I have found. As you rightly point out, having a toddler keeps you very busy, and is very tiring on its own (I have had seven), add into that your MD, lack of appetite etc and it becomes a perfect storm for you to deal with. Many may see you looking perfectly ‘normal’ and wondering why someone of your age is tired. They will not see the struggle going on underneath at the cellular level that we all go through daily, to keep us moving as best we can.
    Don’t forget there is lots of help here, and lots of people to listen even if you just want to vent, you know it will help.

    Mike

    SO many love songs, so little love.

    embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #164771
    Reply To: New to the whole MD thing.

    Thanks mike it’s nice to know that you also find that cannabis helps with pain relief and doesn’t give any awful side effects. I saw my neurologist today and had asked about getting cannabis on prescription but apparently still can’t prescribe it for MD patients as yet. How did you go about getting it medically if you don’t mind me asking?
    Getting referred to a muscle surgeon in Glasgow with regards to my scapula winging. Has anyone else been to anything like this? Has anyone had the surgery?

    Julie86
    Participant
    Posts: 0
    Joined: 21/11/2018
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