Looking to see if anyone here have a LVAD to ask questions about it

I heard that doing exercises is very healthy and I just want to know what easy exercises I can do

How close are we to a cure/treatment? People with similar condition has anything helped regain muscle / strength

I have Duchenne muscular dystrophy and have started making TikTok videos to raise awareness for the condition.

I was curious if there were any topics that you think would be interesting to make videos on, or questions that you think would be good to answer.

My TikTok account is called TylerDMD if anyone was curious.

https://www.tiktok.com/@tylerdmd?_t=8lrLmcreE0P&_r=1

Hello,

How do I find information on specific exon deletion? I tried google…

Hey all so I’m a male 24 years old I have BMD which I’ve had my whole life obviously and haven’t noticed too much limitations although stairs are difficult but that’s it. I just had a consultation with a PT for therapy as directed by doctor and found out some range of motion exercises I couldn’t do and got discouraged. Obviously I know my muscles r weaker than normal people are but seeing the certain movements I couldn’t do sucked. I’ve had health anxiety my whole life and got worse when I found out about my BMD and I also have dilated cardiomyopathy from the BMD. So obviously as I do I research my conditions and their life expectancies and see 30 for BMD and freak out. How do I not put too much stock into these statistics knowing they’re more than likely outdated. I just fear I won’t live a normal lifespan and get to experience the things I want to. Anyone have any insight on these stats and how to not think too much about them? I know physical therapy will help improve my mobility but then my mind reverts back to well the life expectancy said this. Also I have a cardiologist and am on medication monitoring my condition I trust them and know they can help treat it but I still fear.

Male teen with DMD. Was put on blood thinners to help with cardiomyopathy. Starting hemorrhaging into lungs. Has anyone had similar issues?

38/M HMERF Muscular Dystrophy

6th week in and tons of earthquakes later (we had a long 6.4 yesterday), just got my 2nd dose of stem cells and exosomes after being delayed 2 weeks due to the 7.2 Earthquake.

I've been seeing a steady increase in muscle growth in my limbs, and with daily physiotherapy, along with acupuncture, and TCM (Traditional Chinese Medicine) herbal concoctions; am slowly but surely gaining strength. Unfortunately I haven't seen much muscle growth in my core, chest, back, and shoulders yet. But I'm hopeful that will change soon.

For those of you experiencing chronic muscle tightness, I highly recommend giving acupuncture a go, coupled with deep tissue massages (yes it can be painful during), but not still you feel so much more relaxed and relatively pain free afterwards!

I wish you all the best, and hopefully more good news on my next update. Thanks for following me on my journey!

Living with chronic illness and /or disability nowadays is like spending a life sentence in an individuell cell with all the moving parts of your body chackled .

My wife is a carrier with deletion 31-41. It was identified as likely pathogenic during testing etc. we have a child (female) not affected but are debating a second child. During this time we had her family tested and her father came back with the same deletion but is 70 years old and obviously does not have DMD. We felt confident then to have another child but last week found a study from iran and a child with the same deletion and has DMD. We are at a total loss now as to how to proceed. Genetic counselors are also at a loss.

Does anyone have this deletion? Or a similar situation? Any insight? Thanks in advance!

Hi everyone,

I told myself maybe ranting will be a way to ease my pain... 6 months ago I went for a long walk along the Thames and a deep ache suddenly appeared above my knees... it wasn't going away. I couldn't walk properly for weeks. I had to get crutches to move and then it magically disappeared and 3 weeks later it would reappear but with migraines. Migraines were so bad...they took me to the hospital where I stayed 2 nights. Done lumbar puncture and head mri -everything ok:)

My GP thought it was a.strain, then potentially myoisitis and now they wondering if it.might be neurological...its like frustrating

It took 5 months to finally get referred to rheumatology - I got 2 mri scans femur and spine in 1.month...

I am so scared as it is so hard for me to walk more than 2 minutes...without feeling pain and triggering an awful migraine....

Not being able to have a proper diagnosis. Really triggers my anxiety.

Also how do you deal with flare ups?

Anyone with BMD that has experience with CoQ10?

Weird post, but I was wondering if anyone has shared an experience I had awhile ago. Long story short, my roommates left out a chocolate weed edible that was not labelled as such. We were a communal household and often left treats and snacks out for one another to share, so I helped myself to a generous piece. Little while later I found out it was an edible (I don't take edibles or smoke weed for personal preference). I ended up in the hospital with severe muscle rigidity and heart palpitations. My entire body was rigid to a point that I was coiled in on myself - my hands, feet, arms, legs, everything. They tried to flatten me out or get my muscles to relax but I was stiff as a board for several hours. It's my understanding that typically, weed is known to relax muscle tension. I'm wondering if my reaction had to do with the fact that I have myotonic muscular dystrophy (type 2), or if it was just some atypical response to being high off my mind.

I am in the middle of getting diagnosed. Everything seems to line up, but I haven't found any information about any heat sensitivities or intolerance. I can even feel the heat off of my TV. I struggle with cooking due to not being able to stand the heat. Anyone else or any information would be appreciated.

Edited it to add: the cold bothers me also. For example, I have trouble opening my hands. Last July, I thought I had a heat stroke, but the neurologist doesn't think it was a heat stroke. He thinks I have MD and epilepsy. I am just curious how ever since July, I struggle with the heat so much.

Does anyone here with BMD have any experience with Turkesterone?

Hey. Since 6 months back i have had progressive weakness in both forearms, right shoulder, and legs. Widespread body pains and muscle twitches/fasculations. I have facial pains and twitching too but no swallow or speak issues far as i know.

The pains is deep and throbbing, feels like deep in the muscles and nerves. My MRI was clear and EMG also clear.

I recently found out my grandmothers mother, sister and uncle died from some sort of muscular disease, they might think its this one but not sure, one died very young only few years old, one died old at 70. My mother and father are healthy.

I have diabetes type 1 since 11 years old.

I will mention, i have also had gynocomastia for long time, but now its really bad, big hard lumps that really hurt, they want to surgery on me. Also had some testicular pains and urination issues.

Can DM1/Dm2, skip generations and so on? or does this sound like anything else.

The weakness for me is worst in mornings and night, and when i sit or lay down i almost feel electric and paralyzed, when i start walking it works tho

Good morning! I am 25F and had my annual employee physical today. He noted spasticity in both of my legs and said he believes I could potential have a mild form of muscular dystrophy. This was a shock to me as I’ve never heard anything like this in my life but I’ve also always had really inconsistent medical care. It could explain some symptoms I’ve had persistently over the years that I basically ignored or wrote off as my body being weird.

I know there is no way for this group to know for sure, I have an appointment with my primary scheduled next week, but is it even possible for a doctor to make that judgment based on physical examination alone? I’m a little stressed and trying to figure out if I should be worried or if it’s just a weird doctor thing

Hi all, I have a mutation in my CAV3 gene which can cause LGMD, distal myopathy and other muscle disorders.

There’s not much known about the CAV3 gene as far as I can tell. I’m waiting to get into see a neuromuscular specialist. I’ve had these genetic results for over a yr, and my geneticist wanted to diagnose me with “distal myopathy tateyama type” but my CK levels were low & I didn’t feel this was the right diagnosis.

The issue is…I don’t see major atrophy in my legs or feet. I have been told by doctors I have hypotonia and some visual muscle atrophy in my hands.

The main problem is INTENSE MUSCLE PAIN.

The pain feels like the worlds worse shin splints ever. My muscles feel fatigued like I held a squat for 45,000 hours straight or like I hiked Everest. I can’t stand or walk for any normal periods. If I do, my legs become so inflamed that I am bed ridden for weeks or sometimes months.

The pain is primarily around my tibia. My other muscles also hurt pretty intensely but the worst is in my shins.

Have any of you with muscle disease experienced this type of muscle pain?

I have this feeling lately especially because everyone is at this age where they either hit the gym or are already quite big (as in jacked) and for some reason seeing friends that all have the strength that i never will be able to have makes me feel less masculine and a bit jealous. How to cope?

Hi, I have LGMD and was recently considering becoming vegetarian or pescetarian (for ethical reasons rather than anything health related). However I am concerned about how this may affect my health, such as the repercussions of less protein. I tried googling but information seems very conflicting, with some saying that vegetarianism actually benefits people with MD, MS, etc, and others saying the complete opposite. Does anyone know more about this, or personally follow any diets in which they've noticed any health differences?

I was also wondering if anyone has any general diet tips, or diets that help them. For example I know that reduced carb intake is recommended for DMD, but don't know if this applies to LGMD. I've also heard something about dairy I think. I've never actually been given any dietary advice by my neuromuscular team, and although I am planning on asking, it would be great to hear from other people with MD also, so any info would be much appreciated!

Hello, I'm a 21 year old female in the UK. I'm having some very worrying symptoms and its been mentioned once that I may have some sort of muscular dystrophy or systematic disease. May I ask how most of you got tested? My parents don't have any sort of muscular dystrophy, but they may be carriers, and I know this is the case with many people, but it's very hard for my docs here to take me seriously when I bring it up with them. Anyone have any advice on what to do? Thanks so much, I'm really struggling.

I have had sit bone pain for about 2 months now and I really can’t sit for more than an 45 minutes (on good days, maybe more than an hour). It’s basically the point at which your upper hamstrings connect to your pelvis. My physical therapist said it should go away but I’m concerned about it still. All the exercises they say to do to help are not possible for me because it’s a lot of glute bridges and I can barely get my hips off the ground.

Has anyone ever experienced this? I know this happens to people without MD but they have functional muscles so I assume it heals for them fairly quickly. I just hope this isn’t something I’m going to have to deal with permanently. I am finding that it’s getting harder and harder to try and be comfortable in my home. It’s really frustrating.

Because I have DMD and experience bladder inconsistency, I'm curious about its prevalence within the DMD community and the treatments available for it.

Hi I just wanted to share 2 centres in the UK that are dedicated to people with Neuromuscular conditions. They have helpful information.

West Midlands

Cheshire

Also there is good info from charity MDUK

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I cant see a wiki page for this sub reddit but if anyone wants to add useful info as a comment below. I thought it might help.

Really random but I just wanted to make sure everyone here has heard of Power Soccer? It is an awesome sport for disabled individuals and has become so much more since when I used to play. It really helped me deal with DMD when I was in high school and I played for many years!

I'm 16 but sometimes I think is it possible ot get married while having this condition? Is it possible to live a normal relationship with DMD? And can I find a girl that truly cares about me and respect me for who I am?

Hello! :)

I am a current RIT graduate student in the Human-Computer Interaction program. I am looking for individauls to take part in a survey that is trying to learn more about individuals with upper-body motor impairments and how they use their assistive technology devices. This research is for my capstone (research) project, which aims to learn more about the issues in various assistive technology devices, current challenges, and potential recommendations for improvements. I want to gain as much insight and learn more about upper-body motor impairments.After the survey, there is a chance to participate in a observation/interview session with compensation. If you have an upper-body motor impairment and regularly use a computer/desktop, please consider filling out this survey.

If you have any questions, feel free to reach out to me and I would be happy to answer any questions! :) In addition, feel free to share this survey to others. Thank you in advance!

Survey Link: https://rit.az1.qualtrics.com/jfe/form/SV_77HkBawIdYGrMcC?Q_CHL=social&Q_SocialSource=reddit

I’ve always had weak leg muscles, especially had/have trouble standing from a sitting position, but ever since I had Covid 6 months ago it’s been a lot worse. Typically my difficulty standing was from a low sitting position yet now I have trouble rising from heights that never bothered me before and I’m not as steady on my feet wobbling a bit more than I used to. Has anyone else had long lasting symptoms like this? My condition was mostly constant for years so I’m starting to wonder if I just didn’t coincidentally start getting worse at the same time I got covid, but I hope not.

Hi there! I don't have MD, but I'm going through some really horrible symptoms which have been ruled out as not autoimmune (so far) and my cardiologist was mentioning either mito or something like MD or a neuromuscular condition. May I ask what tests I should look at to see if I have any of these progressive disorders? Also, would a normal serum creatine kinase rule out MD? I have widespread symptoms ranging from muscle weakness to breathlesness (i did basic lung function testing and apparently i have something obstructive though no one told me what yet) and aches pains and tingling in my extremities and back especially. Thanks a lot- you guys are real troopers!! I have an EMG and NCS coming up in around 3 months so maybe I'll get a better answer from that, but some days i have horrible symptoms that seem to come on all at once, and other days, i feel fine. my docs do agree that this may be systemic based on my symptoms.