April 18, 2020 at 7:21 am #187330Inherited 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 TracyApril 18, 2020 at 12:37 pm #187331Reply 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.
So many love songs, so little love.April 18, 2020 at 7:11 pm #187332Reply 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!April 20, 2020 at 1:01 pm #187372Reply 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 😊April 21, 2020 at 11:39 pm #187435Reply 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!April 22, 2020 at 6:02 pm #187481Reply 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. CcApril 23, 2020 at 12:45 pm #187494Reply 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.
So many love songs, so little love.April 24, 2020 at 8:11 am #187515Reply 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.
Also awaiting – peripheral blood genomic DNA from Newcastle for a limb girdle muscular dystrophy test.
Thanks again for all your support
Tracy 🤗April 24, 2020 at 10:08 am #187525Reply 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 ccApril 24, 2020 at 2:35 pm #187529Reply 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""""""CatModeratorPosts: 1,002Joined: 20/09/2010April 25, 2020 at 2:14 am #187551Reply 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.
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