r/MuscularDystrophy

If someone is from India and wants to join our instagram group where there are people having muscular dystrophy, you can dm me Or just comment here if you want to be added.

Does anyone have suggestions for getting better sleep? I cannot turn myself in bed, so I am waking up my wife throughout the night to turn or move me. Do people have caregivers to help with that, or are we just trying to be comfortable and make it through the night?

I recently had a blood test that confirmed my ferritin level was at 11, which I understand is very low. I would guess this is due to my diet not containing sufficient iron for the past 6 months or so. Leading up to my blood test I've experienced the following symptoms:

Unable to sprint - weakness in legs

Extended recovery time after gym sessions

Extreme weakness in my upper lip leading to difficulty eating, drinking and smiling

General weakness in facial muscles

Please could the good people of reddit let me know if these sound typical of anaemia? I'm somewhat worried that this may be the start of some sort of degenerative muscular disease like MD, but I don't want to overreact. Thanks in advance

I’m 19 years old and was born with both Nemaline Myopathy and Proximal Myopathy (as well as Malignant Hypothermia). Ever since I was little I’ve been fascinated by bodybuilding and muscle anatomy in general. My favorite characters in shows and movies were always the big jacked ones.

I started going to the gym regularly in 2021 when I was 15 years old. It’s been almost 5 years since then and I’m still going, still constant, and still continuing my macros; with so little to show for it. I’ve had to take breaks over the years due to Appendicitis, Pneumonia, and a hernia. Which all took me out for over a month each. Malignant Hyperthermia cases me to not be able to have commonly used aesthetics among other things (like a sensitivity to steroids) so both surgeries were very scary.

I was wondering if anyone here either pursues the gym despite their diagnosis? I’d like to hear about it.

I weighed 95lbs if 2021 when I started and my peak weight was 135lbs (a lot of it was fat due to rushed bulking). Right now I weigh 110lbs ish. I don’t look good in terms of bodybuilding but I was able to make a little progress.

Also, if anyone has questions about how I try to gain muscle I’d be happy to answer.

My son (18) is going through a barrage of tests right now to see what’s wrong. He has always been on the low end of weight. I have always felt something is off.

Symptoms:
Very Skinny - has always been skinny
Very little muscle
Start walking with a gait about 6 mo ago
Recently is unable to stand from a seated position
Recently is unable to straighten out arms
Straightening out legs is very tight

Tests Results:
B12 deficiency
Low folate
EMG/NCS showed muscle concerns
Severe ADHD
Basic blood test all normal
CBC
CMP
CK

Pending tests:
Autism assessment - believe he’s on the spectrum with asbergers
MRI cspine
ANA Cascade
Extended myositis panel
B vitamin panel
Copper
Vitamin E
Genetic testing
Advanced PT appointment scheduled
Nutritious scheduled

There are more questions than answers right now. Neurologist says based on EMG result this is muscle vs nerve related. He believes fixing the B12 deficiency will not fix this issues but has to be done. He started injections this week. Neuro feels MD is certainly on the table now but said it could other things too. He said between the labs and genetic testing they should give us a much better idea of a diagnosis.

I’m pretty devastated. I’m in the medical field and have a lot of broad knowledge, but this area I’m ignorant in. I’ve been advocating for a very long time about his weight with just about everyone including his mom and all doctors dismissing my concerns. All saying he’s just a little different, he’s just skinny and has his whole life to gain weight. I don’t know what the new normal looks like for him.

Not sure what I’m asking here. Maybe if anyone else has had similar symptoms, test results or experiences? What should I be asking?

Hi

I'm a 33F whose 70M dad just got diagnosed with it (no genetic testing for him but based on symptoms). Sadly I have symptoms like muscle/joint pain and weakness/fatigue and I am looking to pursue genetic testing for myself.

I think having a diagnosis could prove helpful in some respects but at the same time, I am worried about the psychological impact of finding out I have this rare disease that will quite possibly shorten my lifespan and make me lose functional capacity early. It's a tough pill to swallow 😥. Also, I know my health comes first and this is probably stupid to even think about, but I worry how it will affect my romantic prospects (I do want to pursue marriage again) and how many men will say rude things or run as soon as they find out I have DM2. Sigh.... It just feels very heavy right now.

Tell me your experiences with getting the genetic testing done?

I will follow up with symptoms, progression and tests taken-

Symptoms:
- Weakness
- fasciculations
- shortness of breath

Progression:
I started in early summer with shortness of breath when exercising, then a month later followed by weakness in both shoulders/arms and then a month later weakness in both thighs/legs. 3 months after the first symptoms I started getting muscle twitches/fasciculations all over. I now also have some dysphagia.

Tests taken:
- ANA- negative
- Vitamins, minerals, electrolytes all normal
- ck, iron, cortisol, TSH, NfL all normal
- brain mri - normal

19/M and skinny

If anyone has some suggestions on what this could be let me know and I will gladly listen to your advice

What types of MD progresses rapidly? 19M in the diagnosis process (having an emg next week) and have a visit to a neurologist in two weeks. My progression have been quite fast. Shortness of breath, symmetrical proximal weakness and some distal weakness in calfs and forearms. I just want to know which types of MD that has a fast progression!!

If anyone has experiences with it or has some advice let me know, theres no wrong answers!

Hello,

I am hoping someone in here can tell me more about my specific deletion 49-51. Any information is extremely helpful in this critical time.

I have Limb Girdle Muscular Dystrophy and no idea how to deal with life. I'm 38 in a wheelchair can't use my legs at all and barely able to move my hands arms and fingers

What do I do.

In in a relationship with a man who has LGMD. He is the most lovely man I’ve ever met and I want to spend the rest of my life with him. He turns 26 this year and is still able to walk but the fear of him losing that ability scares me. Not because it changes the way i feel for him, don’t get me wrong.

LGMD is still new to me and I’ve been trying to do research on it, but the more I read I just start crying if I’m gonna be honest. I want to be strong for him and I don’t know how. I wanted to know if there is any “support group” or so, for partners to people with LGMD, or if anyone has any tips or advice. I’m not usually a sensitive person but this subject hits me pretty hard. I want to make his life the easiest and help him the best I can. Although he’s very open to me and we often talk about it, I think it would be nice to hear from someone else who’s been where I am. I’m sorry if this text was a bit messy, I just feel pretty lonely in this since I don’t know anyone else with LGMD.

I’m a 20M and I have gained a lot since my graduation and due to it I’m having troubles moving around and breathing because of these issues. Is there a good diet to fix these problems so i can take better of my heart and overall mobility?

I am diagnosed with Beckers muscular dystrophy (myotonia congenita) and I’ve always wondered if it would affect me if I were to get pregnant. Does anyone here have any experience on the matter? Thanks!!

Has anyone used any of these supplements?

Calcium-HMB (HMB) → reduces muscle breakdown (anti-catabolic)

Glycine → calming amino acid, supports collagen + glutathione

NAC (N-Acetylcysteine) → boosts glutathione (major antioxidant)

Acetyl-L-Carnitine (ALCAR) → mitochondrial energy + nerve support

Wondering if anyone has used and had any side effects or saw benefits?