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Is there any treatment for myotonia conjeita

Thank you, this hepls really great with answering many of my questions about MD.

Thank you for posting the video, my mother is sick with dm and either I or my brother may be carriers of the dm gene.

I’m 61 years old and have had Beckers Myotonia Congenita,it’s autosomal recessive,both of my parents have to have the same mutated faulty chromosome,clcn1 gene 🧬,potassium triggers my myotonia,along with panic attacks! I’m getting much weaker at my age, and no one in my family on my mother or dads side of the family have ever had my condition,my dad when alive had an elite athletic variant!

Could dysphagia also cause esophageal spasms? Or the dysphagia as it relates to DM2?

The problem with DM is that there are so many different types. I gave in my hands wrists and face. I have an enlarged heart I also suffer from sleep apnea all of this is due to DM

I have myotonic dystrophy type 1. I've had it since I was 38. I would like to apply for testing drugs that could help my age (58)

I have myotonic dystrophy too. I am 16 years old, Please I need guidance, Help me

Thanks for this video....helps me on my journey. Very informative

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Shared and subscribed

This is me thank you for a great presentation

Thanks

Thanks

Hello folks🙇🎩 Could you estimate "how many" ? filing claimants whom are as grossly impaired as my 64 yr old Brother and who were ! Denied ! at initial stages again at recon appeal whom continue enduring waiting (my brother now at 2 years 11 months) HOW MANY are denied still waiting and are as impaired as my brother ?❓? He had an acute L m 1 MCA devastated stroke 2 yrs 11 months ago AND; since that day He Can't Speak Can't Write Can't gesture with any accuracy but poor Can't make informed decisions Is severely globally aphasic he presents with severe speech apraxia my Brother's unable to express wants desires needing He Can't communicate🙇 Well documented clearly defined anyone hearing about Gregory's trouble in obtaining lawfully entitled disability benefits are dumbfounded.....! and can't believe it's actually been 2 years 11 months and for all intents and purposes stalled out in an abysmal lost in wait Gregory was hospital discharged homebound hospices approved 45 day's from stroke and his treating hospital's would not directly discharge to me without first putting him in SNF because it was thought his level of care requires more than my capacities to handle myself 🙇it was unannounced to me a fast one over night but I had him brought home immediately as he went scared crazy and kept leaving trying to leave. My point is there is absolutely and I mean absolutely no doubt my brother is dire disabled He's assistance dependent heavy requiring 24 7 supervision incontinent x 2 (our washing machine dryer busted 25 months ago I'm laundering soiled bedding through kitchen sink blasting off the heavy out back with a garden hose 24 7 I'm exhausted I'm discouraged Scared Disability adjudicators authored a letter of explanation reading: "an uncooperative claimant unwilling to provide medical evidence of an alleged disability"🙇 Nobody's understanding that because they've had all his treating hospitals records they obtained them but I can't believe they've ever reviewed read them ?🙇 Most of the typical forms sent to my brother to read and fill out return🙇 He couldn't do work history or anything he's totally globally aphasic incapable of cognition anything near what it takes to do those kinds of things DDS wasn't understanding this I guess they get mad in response threatening to go without it and it'd be in your best interest to fill out our forms 🙇 More to the nail head you see my brother isn't aware of any of this ? Craziness...🙇 day by day he can't he doesn't know and I'm so feeling awful for him I'm on fixed income with MS and we can't resource his basic needs. It's sad and hurting I'm sole care assist here we're rural we're...! Slipping I'm loosing it it's so physical painful but no skilled nursing facility period I'm scared I'm OVER pushing it deliberately and I am in high risks for major acute events.....🙇 He's listing criteria for 11.04 A 11.04 B 111.04 111.08 A B 11.08 A B umm o His claim is currently stalled in at the Skyline Towers 15th floor in Leesburg Pike VA and I'm he's bed bound and weak frail tonic clonic seizures monthly it's we Need needed an appropriate adjustable hospital bed in rails we see him enduring that tattered out junk sofa a twin mattress on floor aside that filth WHY WON'T THEY HELP HIM ❓ why🙇 I need things for him it's 24 7 it's 2 yrs 11 months I'm numb my system I'm in danger to of possible medical events that'd put us in worse than now it's possible I look like death My Brothers everything I just love him Too Pieces❤💛 🙇✝➕ 🛌 Thanks for SHARING!! Sincerely Bradley Parker

When will this medicine be available Please respond

how are you

Praying this comes out soon my wife is really sick from DM1 Myotonic Dystrophy

A neurologist is your best bet. We had genetic testing as well. DM1 is most troubling. Best wishes ❤

*promosm* 😱

I know this was posted 2 years ago, In going to look for something more current but I would volunteer for a trial, all rushed considered including death, and if that was the case I'd be ok with it if it would progress research faster to help others.

I am 47 with DM1 I just received a pacemaker cant raise my arms above my head . Tired all the time but I still am able to get out and go camping in a RV and I am thankful for that.

This study/clinical trial seems to be looking for outcomes on reducing myotonia symptoms. IE. Measuring muscle relaxation times Will there be any intentional focus on reducing the dystrophy side? IE. Regaining or growing muscle fiber.

I’m am so tired all the time. I am literally trying to get up to go to work smh. I am 29 years old and feel normal outside and literally do not feel normal inside. Just tired of being tired!

Massachusetts Caregiver Resource for DM

Hello from space coast Florida 👍 i have been diagnosed with this disease. Thank you

Foundation how to get member ship because myself is suffering from mytonic destrophy loving in Pakistan and since long time today age 45old JavedTariq Pakpattan Pakistan reply

Thank you Senator Klobuchar, we appreciate your support.

Thank you, Amy! That pesky 19th chromosome.

Where this myotonic Fundation have a meeting?

My wife has DM 1 46 years old and now i need to stop full time work it is multi system.

I came across this post while trying to discover what could be ailing me. I am feeling very bad for these people and I wish them ease in their conditions. Thank you all for sharing your challenges.

My wife has DM 1 in Australia wishing for a cure as it is progressing.

Does it affect a man using a urinal my son gets urine on himself trying to use his urinal any ideas to help

Please make a video about clinical trials of new drugs of myotonic dystrophy.

I am in Australia really keen for this for my wife

Everyone share this 🙏

what about Australia

I'm in the 15% ever day pain

thank u for talking about it

My wife has this

Please everyone share this and raise awareness

Hi my wife has Myotonic Dystrophy the bad bad form, we need new genetic test to see how many repeats but they would be high she is 46 now. We live in Australia and would be interested in this treatment and or cure. It is starting to progress now i am highly stressed as going to work is getting hard.

I have Myotonic Dystrophy DM 2. I workout 5 days a week (when I can) and exercise is definitely important. Thank you for all you do!

I am so glad to see this. My granddaughter was born with myotonic dystrophy in 2019. It was only because of her diagnosis that many of her family members found out that they had myotonic dystrophy as well but their symptoms had been misdiagnosed. I hope and pray awareness will make a difference in all their lives.

Thanks again for conducting these meetings. It brings me closer to an understanding of the current Drug development pipelines having a partner with DM1.