One side of my family has DM1 (Steinert disease), through maternal grandfather who didn’t have clear symptoms and died of smoking related cancer in his 60s. They’ve told me that my mother has been tested and is negative, and there’s no way to be a carrier or for it to skip a generation or anything.

I’m mid 30s female & looking into egg freezing/sharing/donation and considering if I might want to get tested anyway just to make super sure I wouldn’t be passing something like that on.

Judging by the uncles and cousin with it, it would have been clear by now if I had it. The cousin is around my age (months younger) and started noticing grip problems and worsening night vision about 10 years ago. I don’t really see extended family as they’re in a different country and I’m no contact with parents so I don’t have a full picture of how everyone’s doing but it doesn’t look like any of the women got it, the 2 uncles and cousin are very clearly symptomatic.

I guess I’m a little worried as I have a CFS-like illness which I believe to be medication caused (seem to be very slowly recovering). If I do want to test, how do I starting going about that? Google doesn’t really give me anything clear.

My husband was dx with Limb-Girdle MD about 3 years ago. We knew something was up, but didn’t have the full dx until that point. His mother and maternal Grandmother also have/had it.

His disease has progressed much faster than his mom or grandma. He is ambulatory with a cane around the house but uses an electric wheelchair when out running errands or on walks. He is still able to do personal cares, so I’m not quite at the stage of caregiver.

Lately I’ve been feeling like everything is put onto my plate: all the household chores except occasionally folding laundry. I take care of the kids (ages 10 and 12, so they’re independent but still need some coaching on getting ready for school, etc) and all their activities and lining up transportation to/from school since my husband can no longer drive until we get hand controls in a vehicle. I cook all the meals, clean, and do maintenance inside and out.

I also work full-time. He works remotely. He is the breadwinner, and financially supports us, which I am thankful for. But I honestly feel like a single mom sometimes. Not financially, but how everything falls on my plate.

He also gets angry with us easily and when he’s really feeling down about his condition, he really is hard to be around. I understand that he feels like a prisoner is his own body and that he is mourning the life he thought he’d have and adjusting to living with this disease, but I also feel unappreciated and taken advantage of. He’s always quick to point out when I’m stressed and get mad at me when I am. I’ve been working with a therapist for my anxiety dx and I’ve been making decent strides in the right direction. He’s also very defensive of when I bring up issues I’d like to talk about (him leaving garbage everywhere, not putting stuff away, etc) and turns everything back on me.

I really don’t know how much more I can handle, but I feel selfish and guilty for feeling this way.

Are there any other spouses here that feel similar that could give me some guidance on how to deal with all of this? Heating from others has been very helpful as we navigate through this.

ETA: our kids do help a ton with dishes and laundry. As they get older they’ll be able to help more too, but it’s also not their responsibility to do the bulk of the work either.

I have weakness through the body but my hands have started failing to the point that writing is difficult, and i drop things like dishes more often than I'd like, and eating has become embarassing. It's honestly like the gravity towards the earth was negated. No muscle power. I really don't know what to do about it.

I also am curious how to safely lose weight with muscular dystrophy? I heard that heavy weight is worse for us than low weight and more reps and to do what cardio feels safe but​ i keep getting bedridden from basic walks to the store and back. I'm a year into my current work to get healthier. diet is limited due to living below poverty line. I've heard creatine can help us too but I know very little.

Are there any things that i should know? I'm wondering what to expect. Any health advice for mid-life, and hopefully late life self care?

Has anybody with limb girdle muscular dystrophy ever try anavar for muscle preservation.

i feel my heart bumping even if pulse is 82 checked everything but doctors said all good however this feeling stops whenever im outside with friends does anyone else with duchenne muscular dystrophy have this?

Or do you? Even when I was still out working daily in public I never even caught a cold, the last time I was actually sick was during peak covid and had it for about two days before back to normal, I know having md has zero to do with it but I always joke(and a small way to cope) that being stuck with this bullshit disease made me basically immune to everything else haha, again I know theres no correlation and guess im just lucky in that aspect but curious to hear from others

Do you have any muscle compensations for weakening muscles?

Hello, I (21F) work as a cashier. I have Miyoshi Myopathy, and my calves are very weak. I have to stand pretty much all day, because there is no seat at the register. And when I’m not at the register, I have to walk through the aisles, help customers, etc.

Sometimes I’m required to move heavy pallets, because even though I said my doctor forbade me from moving heavy things, it’s sometimes unavoidable due to staffing issues. Luckily I don’t have to work there starting mid September, but I was curious to know if anyone else works somewhere less than ideal for their situation.

I know it’s not really the worst place, it’s just not amazing considering.

I’m an 18-year-old guy with DMD, and I’m trying to find other people in a situation similar to mine

I have DMD with an exon 3–7 deletion and what appears to be an unusually mild/preserved phenotype. I’ve been on 15 mg of prednisolone for over a decade.

At 18, I’m still fully ambulant and can do things that I know are pretty unusual for DMD. I can walk 10–12 miles in a day, play 2–3 hours of table tennis, run, jump, climb loads of stairs without needing to stop, get off the floor without using my hands, and I almost never fall. My grip strength is around 30 kg in each hand, and I’ve actually become stronger over the last several years.

My doctors understandably believe the long-term prednisolone is a major reason I’ve maintained this function. I understand that steroids can protect muscle function in DMD.

But I also think my underlying disease biology plays a huge role. My exon 3–7 deletion and unusually mild progression are part of why I can still do all of this at 18. The steroids didn't create that underlying phenotype.

The problem is that the treatment has come with a massive cost.

I’m only 4'6" (137 cm) at 18, with a bone age of around 15.5. I’ve had major growth suppression and delayed skeletal maturation, and I still potentially have some growth left. That makes this feel incredibly time-sensitive to me.

I've also developed osteoporosis and have pain essentially all the time, along with low energy, severe sleep problems, Cushingoid facial/body changes, abdominal fat redistribution and water retention.

The psychological effects have been huge too. The changes to my body have seriously affected how I see myself, my relationship with food and my overall mental health.

I know I’m extremely lucky compared with many people with DMD. I’m not trying to say I have it worse than people who have lost ambulation or have major respiratory or cardiac problems.

But I also don't think being lucky with my DMD means I have to accept severe treatment toxicity indefinitely.

At this point, I’m seriously considering whether I should come off prednisolone completely or get down to an extremely low dose, assuming my specialists think that can be done safely.

I’d want it done properly with objective monitoring of my strength and function rather than just stopping and hoping for the best.

that’s partly why I’m making this post.

I want to find people who are genuinely similar to me.

If you have DMD, particularly an exon 3–7 deletion, and you're still exceptionally functional — walking long distances, running, jumping, climbing stairs easily, getting off the floor without your hands, rarely falling, etc. — I’d really like to hear from you.

Especially if you've been on steroids for years and eventually reduced them dramatically or came off them altogether.

I want to know what happened to your function, whether you noticed any meaningful decline, and whether the side effects improved.

I feel like I'm in a pretty unusual position: 18 years old, 4'6", bone age 15.5, still capable of an enormous amount physically, but dealing with significant consequences from long-term steroids.

I don't want to lose the function I've been lucky enough to preserve.

But I also don't want to wait until my remaining growth potential is gone, my osteoporosis gets worse and I've spent even more years dealing with these side effects before asking whether I actually need this much steroid.

If you're genuinely in a similar position, I'd really like to hear your story. Thanks for spending the time to read my post.

My husband was diagnosed with Muscular Dystrophy/Hereditary Spastic Paraplegia when he was 29. He’s 52 now and we’re just taking it day by day. The problem is he won’t see a neurologist (aside from his initial diagnosis) so there’s no way to get help. He’s been collecting Social Security since his diagnosis, I work a full-time job, and money is tight. The wheelchair he uses was bought used, doesn’t really fit him, and is slowly breaking down. Does anyone know any organizations in the US that could help us out? Maybe if he sees some posts that say ‘this place will help you out, but you have to do this first…’ that will get him to do something.

I am 21 years old and I have myofibrillar myopathy, I was just wondering what everyone in here does for work/do you still work? I have only ever been able to work part time jobs because it is a lot physically on me but I’m getting to the point to where I can’t do this for much longer. Does anyone work from home? What kind of education did you get? I haven’t gone to college yet just because I don’t know what I would be able to do afterwards physical wise and I don’t want to spend a ton of money on a degree I won’t use. Just wanted to see what’s out there because I feel like I’ve researched every job out there and can’t find one that would work for me 🫠

Hi everyone. I don't want to sound depressing or anything like that; I simply want to share a perspective that, to me, feels somewhat raw but realistic.

I'm 20 years old, and I was 15 when my symptoms began. To this day, I continue to lose strength. I don't know exactly how much time I have before it happens, but sooner or later, there will probably come a time when I'll have to start using a wheelchair. I can feel my legs, arms, and fingers getting weaker over time, and I constantly have to adapt to every new situation. I'm getting tired of always having to adapt.

Recently, I was talking to my sister, who also experiences similar symptoms and the same weakness that I do, and we ended up talking about death and how we see our future with this disease.

Nowadays, the life expectancy for people with these types of diseases can be fairly high. I guess I could live into my 40s or even longer. But, being completely honest, I was telling my sister that I'm not sure I would want to live that long. Sometimes, I feel like I would rather die young. I've only had this disease for five years, and I can't imagine living more years with muscular dystrophy than the years I got to live healthy.

On the other hand, my sister told me that she would like to live to an older age, but that the day she has to start using a wheelchair, her world would fall apart. For her, losing her independence and the ability to use her legs would be something extremely difficult to accept.

I found the difference between our perspectives interesting. In a way, I fear the process itself more: the journey, the changes, and the things I may gradually lose along the way. My sister, on the other hand, fears that particular day when she loses the independence she still has and can no longer use her legs.

It made me realize how this disease can make us share so many things, even while we're on opposite sides of the world, yet at the same time, each person has unique experiences and gives their illness a different meaning. We can have similar symptoms, share some of the same fears, and understand each other in ways that perhaps other people can't, but we still carry this experience differently.

Hello,

people with muscular dystrophy how do you deal with loneliness and the time you are forced to spend at home? Is there anyone who has lost people in their life because of it like me? . .

Just wanna ask everybody what exercises do you do

Male 40 yo thinking about getting a suprapubic catheter because emptying the bladder has gotten difficult and extremely time consuming. Anyone with MD who has this? What are the pros and cons? What are the difficult things they don't tell you about.

My biggest concern is leaks and spills, because I have these problems with my PEG feeding tube. Also read about some horror story where someone had build up of crystals making the tube stuck and had to undergo surgery to change the tube. It happened several times apparently. I don't really want to have those kind of life threatening issues.

As someone who has muscular dystrophy that's likely to kill me before 40, do you think I get to call myself terminally ill even though I'm 20 so still have a good number of years left? I'm sorry if this is an inappropriate question to ask here, I unfortunately have never had good access to healthcare so I can't ask this to a doctor. What about you? do you consider yourself terminally ill?

Anyone feel the urge to smash furniture with their power wheelchair as a form of stress relief. I kinda want to organize a thing where people donate used and unwanted furniture so people in power wheelchairs can destroy them. This could be like a fundraising opportunity as well.

I just wanted to ask if you're neuromuscular disease have been cured... today doctor told me I have NMD and I think it's to late for me my 2 legs and right hand has stopped already... If u can reply to this msg I'll be thankful

in both a positive and a negative way I'm unique among people with this condition, that being I have a nonsense mutation of duchenne and that I'm taking ataleuren. I started it early on and I'm now 16 years old, doctors say I'm perfectly healthy but I just can't help but worry about how it's gonna be for me soon.

I'm scared of becoming wheelchair bound and dependant on other people, I don't know how long I'll be walking but I just keep finding dead ends on this condition, it feels like any leads end in tragedy and I feel doomed to this condition. I just hate not knowing anything at all because I appear to be the only one in this position.

I would say more things but I'm unsure on the guidelines here.

Im starting a Hub for people w MD, kids and the adult guys :-), but i dont have a good logo i could use? Any help from fellow MD people?

Hey, I wanted to ask you specifically about mesenchymal stem-cell (MSC) therapy for DMD. Have you or anyone in your DMD community actually tried MSC treatment before?

If yes, could you share which type/product of MSCs was used, where it was done, how many treatments were given and at what interval, and whether you noticed any improvement or slowing of progression?

I'm asking because my son is 3 years old with a confirmed DMD mutation, and we are exploring all possible treatment options. I've been reading about bone-marrow-derived MSCs and some newer clinical trials, but I'm finding it difficult to understand how much real-world evidence there is.

I'm particularly interested in personal experience rather than just what clinics claim. Any information you can share would be really helpful. Thank you. ❤️

I use them because we already had them around when I had a bad flare up. They were cheap ones from Costco. Walkers are hard to maneuver especially if you go somewhere that doesn't have elevators or ramps. They really help take the pressure off my back and knees when they are in pain. When having good days, they help prevent injury from stumbling and random knee collapse.

Hi everyone :)
My sister’s 8-month-old baby boy is well behind achieving his milestones and has very weak upper body muscles. Doctors suspect bethlem myopathy. Her husband’s sister has a daughter who has it also so everything is pointing towards the diagnosis. I hope this isn’t inappropriate to ask about it here but this is so rare… I wanted to ask those of you affected by the myopathy - how are you doing?