Viewing 14 posts - 1 through 14 (of 14 total)
  • #187330
    Inherited distal myopathy!!

    Good morning, well it’s been some time and a journey we all have but the diagnosis is Inherited distal myopathy!! Anyone else like me ? I’m just early 50’s and female . Would be great to have some chat / information.
    What I have to maybe look forward to …lol
    I must admit it’s alittle fustrating to get the news at this time re: pandemic, your even more isolated the questions don’t get answered.
    🤷‍♀️ my treatment is on hold like everyone else.
    Thank goodness for this support 😘 hope you all keeping safe and well. Take care Tracy

    Tracyallcock7
    Participant
    Posts: 0
    Joined: 06/01/2020
    #187331
    Reply To: Inherited distal myopathy!!

    Hello and welcome Tracey. as you say not exactly the best time to be told your diagnosis, but I wonder if there ever is a good time. I am sure someone will come along soon who already has your condition. In the meantime have you any specific questions that you need answers too. often you will find that although our respective conditions are different we do share many of the same problems ike PIP, mobility and of course getting support.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #187332
    Reply To: Inherited distal myopathy!!

    I hadn’t heard of your condition, Tracey, but I sympathise as to the timing of your receiving your diagnosis.

    If there’s one thing we have in common, it’s continually explaining our conditions to all in sundry. Even GPs often remark that we are their first MD related patient!

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #187372
    Reply To: Inherited distal myopathy!!

    Thankyou Mike and Ranald for responding so far ..
    Agree no time was going to be a good time for this news !
    But hey I’m positive and at least I have answers.

    One thing that I’m finding a struggle is exercise… before this virus I was going to physio and hydrotherapy- I get so tired after activity and the next day.

    And yes, so very true I’m finding that GP and other professional health don’t understand my condition! Can make you feel very alone and vulnerable.

    Thanks again Tracy 😊

    Tracyallcock7
    Participant
    Posts: 0
    Joined: 06/01/2020
    #187435
    Reply To: Inherited distal myopathy!!

    I exercise by walking my dog, that’s about it. My neurologist, that I see annually, she sent a physiotherapist to visit me at home about 2 months ago, but I haven’t really followed any of the exercises she set me because they just cause pain for no gain as far as i’m concerned.

    You would need to watch very closely to see me do a lunge, all the while holding onto the counter and table on each side; I’m talking a couple of inches of movement! If I go any further, I just collapse, just like the puppeteer has let go of my strings.

    I am on Gabapentin and Amitriptyline for pain management. That and Bell’s whisky, which I struggle to get on prescription!

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #187481
    Reply To: Inherited distal myopathy!!

    Hi all, I just wondered does anyone have more than one condition, as have more than one. I also struggle with exercise. It causes me pain and I try leg exercises my legs turn to jelly. Cc

    Crazy cat
    Participant
    Posts: 0
    Joined: 27/01/2019
    #187494
    Reply To: Inherited distal myopathy!!

    I have three conditions, two muscle damaging ones and diabetes. In addition my diaphragm on the right side has failed and my intercostal muscles have failed on both sides. (Still no letter though).
    I always tried to impress on my students that people can have more than one condition , and consequently you should always be aware of what if going on with your body as you clearly are.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #187515
    Reply To: Inherited distal myopathy!!

    Good morning all, regarding exercise I was walking my dog most day for a short walk but started tripping and had a nasty fall. Then after the muscle biopsy had hematoma and don’t appear to be tolerating exercise and balance very well.

    And yes to other health conditions ( think I’m falling apart) they found I had , hiatus hernia and familial hyperlipidemia.
    Elevated ck.
    Also awaiting – peripheral blood genomic DNA from Newcastle for a limb girdle muscular dystrophy test.

    Thanks again for all your support
    Tracy 🤗

    Tracyallcock7
    Participant
    Posts: 0
    Joined: 06/01/2020
    #187525
    Reply To: Inherited distal myopathy!!

    Hi all, I too have a hiatus hernia, celiac, arthritis as well as the opmd. I to have episodes where my feet don’t cooperate, I’ve also been getting pain all over and stiff. And to top it all where I’ve been dying my grey roots for many years it’s getting a bit thin at the front so I’m going use the the lock down to embrace my grey hair, sorry guys hope you’re not feeling left out of the last bit :LOL: cc

    Crazy cat
    Participant
    Posts: 0
    Joined: 27/01/2019
    #187526
    Reply To: Inherited distal myopathy!!

    Good luck with your hair crazy cat 🤣
    I’m going to attempt painting my nails 🙈💅
    Think this lockdown is getting to us all !!

    Tracyallcock7
    Participant
    Posts: 0
    Joined: 06/01/2020
    #187529
    Reply To: Inherited distal myopathy!!

    just seen that hairdressers cant open in next 6 months. I will need to DIY my roots lol least its summer. hope no one notices me coloring hair in garden. not risking my white bathroom lol

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

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #187551
    Reply To: Inherited distal myopathy!!

    I solved the hair cutting problem years ago, it involves a safety razor and shaving cream! Not very appealing for the women, but 10 minutes every 3 or 4 days saves alot of time, money, and batting off inane questions from the barber.

    I would however like my head shaved by Mahesh Hayward at Gentlemen and Rogues. You could do worse than watch some of his beard and hair cutting videos on YouTube.

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #187552
    Reply To: Inherited distal myopathy!!

    For me, I am just glad I have some at my age. Not bothered about the colour.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #187553
    Reply To: Inherited distal myopathy!!

    At least we can still laugh😂

    Crazy cat
    Participant
    Posts: 0
    Joined: 27/01/2019
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