Myotonic dystrophy

[@theumpteenthtime8854]

"My right hand side is wasting away, and my left is as it has been for 20 years." I felt that one.

[@pandey_87_ji]

Myotonic DM 1 or what you suffering from?

[@gailfraser2114]

My friend has My tonic Dystrophy 1. Diagnosed 3 years ago.. Having difficulties. We. Thought. we were. alone. thank you for been there.

[@MuscularDystrophyUK]

Hi Gail, do feel free to get in touch with us, or encourage your friend to, if she would like any further support and information on the condition, our freephone helpline is 0800 652 6352.

[@gailfraser2114]

Muscular Dystrophy UK yes he would like support.. He is very happy you are there..you made him smile thank you...

[@MuscularDystrophyUK]

Thanks Gail, that's great to hear. We'll look forward to speaking to him.

[@Абдуманноп-щ8ы]

How is your friend health after 5 years?

[@pandey_87_ji]

​@@MuscularDystrophyUK काश ऐसा कुछ इंडिया में भी होता,,तोह यहाँ भी लोगो की मदद हो पाती,,लाखो लोग पीड़ित है और अपनी ज़िंदगी कष्ट में बिता रहे है,,बिना किसी के सहयोग के,, आपके जानकारी में अगर कोई संस्था हो तोह कृप्या बताए,,बहुत जरूरी है

[@PH-xw1ri]

I love his attitude at the end. Do what you can. Help others. Enjoy life. Medicine is advancing quickly. DO NOT LOSE HOPE!

[@dryoutube]

Great video. As a hormone doctor, I would also add that it's important also to screen for cardiac disease and low testosterone (hypogonadism) in patients with muscular dystrophy!

[@Testo-Frede]

got 50% chance i got DM2, my testorsterone is 37 and has to be between 250-700. Will taking testorsterone do more harm to my body if i got DM2? im pretty muscular and 23 years old.

[@pandey_87_ji]

Is everyone DM1 pateint have heart problem??

[@towritejody]

Wow. I thought my family was the only one for a long while. My mother has this along with three of her brothers. It's heartbreaking to watch my mother live with this, but she's one hell of a trooper. My grandmother (her mother) and my great-grandmother suffered from it as well so it's been a big part of my family for a few generations. Thanks for creating the video and sharing your story. Your attitude is an example for us all. I hope for substantial medical advancements in regard to M.D. Be well brother.

[@danielmourao8774]

Me and my twin brother have also Myotonic Dystrophy 1 but we share the same mindset as him, we do anything we can and as best as we can, we can do anything not as fast or as good but we manage it.

[@pandey_87_ji]

How many years you had this myotonic dystrophy?? Can we talk on insta or other sociap network?

[@Razzzzze-mb2tm]

The last word of the patient make me happy 🥰

[@fitzgeraldrefugia1752]

Thank you, I am myotonic as well, I think I am, I just want to be diagnosed properly but there no such thing like this here in the philippines.

[@iusedthewiki3529]

Got diagnosed the other day, trying to find the effects, and other dangers

[@andrewtaitz6225]

Hugs from long distance

[@FullTimePatient37]

I have general Dystonia...so yes ... myotonia..😢

[@taylortymothy3972]

Sir, I don't know which muscular dystrophy am I suffering from? can you help me out? My symptoms are 1.unable to walk very fast and jump 2. do not stand immediately after sitting from5 minutes 3. do not climb steps speedily 4.when I close my fingers, I am unable to release them fastly. 5.unable to catch a running vehicle. these are the symptoms I have since my childhood

[@shaamtehd]

So how are you now....which medicines you are taking...??

[@shaamtehd]

@@psisky so..when you diagonse which medicine do you take and what were your symptoms...now how are you..??

[@lucieann21]

Shaam Tehd you need to see a neurologist and explain the symptoms you have, They will do genetic testing to see what you have. No point guessing. Have you been officially diagnosed with anything?

[@lucieann21]

psi-eye if you weren’t given a genetic blood test then you need to do that. Some of the symptoms of MC do overlap with Myotonic Dystrophy but they are vastly different diseases. Some doctors (ill informed ones) diagnose based on symptoms or an emg alone.. this is not good enough and a blood test must be done to know for sure.

[@faisalatta7308]

@@psisky.. How do u diagnosed this disease.. Kindly share your story..

[@gamergirl5231]

Great video! Good job!

[@dominicmassaconi6160]

I just got diagnosed at 56

[@shamsulalam100]

Is there difference between myotonic congenita and myotonic dystrophy or muscles dystrophy???

[@mrskrobinson1986]

That's what I'm trying to figure out

[@lucieann21]

Yes Myotonia Congenita and Myotonic Dystrophy are two seperate conditions. MC does not have heart problems, cataracts, etc and is not a muscle wasting disease.

[@shaamtehd]

@@lucieann21 you mean in myotonia congenita does not have heart problems.....it only effect facial..hands and feet muscles?? How do you know about it..?? Can you tell me about it in detail...if progress quickly or slowly..??

[@lucieann21]

Shaam Tehd I know about both because I thought for years I had Myotonia Congenita but then this year my genetic results finally came back which showed I have Myotonic Dystrophy. Join the Facebook page “Myotonia without Dystrophy” for more information about Myotonia congenita and sodium channel Myotonias. Myotonic Dystrophy is a type of muscle Dystrophy and the only symptom it has in common with MC (myotonia congenita) is the Myotonia (delayed muscle relaxation). Google will tell you more about both.

[@lucieann21]

Shaam Tehd she mentioned in this video “congenital Myotonic Dystrophy” do not confuse that with Myotonia Congenita... two different things.

[@chicoconcurseiro]

Hello! I learned about a new drug from ARTHEx Biotech that can greatly help people who have myotonic dystrophy. Do you have any predictions as to when this new drug will be available for purchase?

[@pandey_87_ji]

I think its currently its clinical trail..may be 1 or 2 year after

[@pandey_87_ji]

Please share some details about pateint.. What is his age How many years he suffer from this. What kind of symptoms he had.. This kind of information need us please try to understand our feeling

[@virendarrai6937]

I have been suffering from muscle disorder POLYMYOSITIS.since last 6 years. What medicine will help me for recovery?

[@MuscularDystrophyUK]

Hello, for more information on treatment for polymyositis please visit our website here: musculardystrophyuk.org/conditions/polymyositis-pm-and-dermatomyositis-dm/treatment

[@azeemuddinsiddiqui7434]

Is ki koi medishan hai kya sir

[@wastedlife9864]

My left hand thumbnail is stiff and weak for now ,is it myotonic dystrophy

[@nillagregorini4192]

I tempi per la cura

[@jeeperp3926]

Someone please tell women that scarves do not hide their turkey necks, they only make you look worse.

[@dominicmassaconi6160]

Find a cure

[@pandey_87_ji]

Soon it's come.. trail is on going

[@JaneSmith0709]

I can't hear a word that lady's saying, I wish she'd speak up. That's so annoying.

[@jos7006]

No problem here. Increase your volume or buy a better watching device

[@JaneSmith0709]

@@jos7006 Rude!

[@jos7006]

@@JaneSmith0709 ok karen

[@JaneSmith0709]

@@jos7006 Hahahahha!!!

[@kurtgannon94]

Could hear everything just fine