My brother passed away from this genetic disease distal muscular dystrophy father side, my father's mother initially passed it to my two uncles, my dad did not have it, my brother had it at age 54yo...he passed away at age 62 one month before turning 63yo, i first had fallen weakened legs 3 yrs ago, i am now 60yo female and both of my legs have weakened and lost muscle mass and now my right hand is starting to show weakness ...i am hoping stem cell tx may reverse the course...
@AhmedFathy-gz7tf Жыл бұрын
Thank you for sharing the knowledge..
@Luckiecchi7 ай бұрын
I'm a 44 year old male. I ended up in the hospital October 20th 2023 with high Creatine Kinase levels. My first night I was at 1800, then over 4 days it went as high as 8000 CK level. I was on IV for 2 weeks at 4-5 bags or 4- 5 liters of IV a day for 14 days before my CK levels dropped to 983 which was safe enough for me to be discharged and sent home. It took 6 months and after a 2 month and half month wait for a genetic test on my blood, I was told I tested positive for a type of Muscular Dystrophy. I was not told what type I have, just that I tested positive for a type of Muscular Dystrophy. I was told it will be a slow progression. The pain is so very painful. I smoked cannabis since I was 14 years old. Is it possible that for 30 years my cannabis use has kept my Muscular Dystrophy under control? I am thinking of asking my doctor if I qualify for medical CDB oil. If it is the inability to relax the muscles, my thinking is that CBD oil will help relax the muscles and it might be possible that the CDB I been smoking that is in the cannabis I smoked has been helping me for 44 years at controlling the symptoms. If I have had this since birth, how can I go a lil over 44 years of my life and not know I have this terrible disease? I think cannabis or CBD had been helping me and I didn't know. I just want the pain to stop. My entire life I never felt pain. Maybe not feeling pain is sign something was wrong. I felt like Superman every day until the day I ended up in the hospital with 8000 CK levels. Ever since then just pain around the clock in my feet, calves and hands and forearms and neck. Sometimes the back and shoulders.
@psisky11 ай бұрын
I have myotonia congenita but my muscles are wasting. Especially the sides of my temples (very hollow), under my eyes, around my mouth. I also have ptosis. I have large biceps and calves but no strength and upper leg muscles are very weak and soft. I also can't lie on my back as my heart feels very uncomfortable and my lungs get congested with foamy phlegm for days even after a short recline position. My bare feet are shaped like someone wearing very high heels. Any connection to MD?
@maryclynch9356 Жыл бұрын
My husband has inherited MD 2. His father and his uncle had it. You explained it very well. Do you have any insight into the stem cell researched and gene therapy. ? Much obliged. Mary Clynch from Scotland x
@Zarashah657 Жыл бұрын
My finace too had MD2!dear i want to know life with these patients is normal or u have to face challenges
@donnalynn28 ай бұрын
@@Zarashah657 As someone with type II living with it, its a fight every single day. no matter what you do, you lose more muscle mass. my great grandfather and my father had this, only they didn't know what it was. My dad was misdiagnosed. Now I have it, my older sister has it and we are all sure my older brother have it but he refuses to talk about it, All three of my dads kids and countless grand and great grandchildren at 50% RISK. i don't know why any research goes to type I but we need help too. It is a real struggle every day.
@roksanaakhter-ry6bj Жыл бұрын
Have any treatment for the symptoms,?please help me.
@prasadrongali5292 Жыл бұрын
Dear sir, I have small doubt, my baby diagnosis with DRD in genetic test, doctors suggested for levodopa and carbidopa (half tablet mix in 6 ml water and give 1 ml two times in a day and after 5 days 1.5 ml two times a day) we are giving to be she responding very well, here my doubt is how many days or weeks or months it takes to recover from DRD in baby (my baby age is 8 months old and she didn't reached her milestone, now she trying to control her neck
@Shovaramoli2054 Жыл бұрын
How to myotonia dystrophica is tetmem
@achannaborelli72785 күн бұрын
సార్ మీ అడ్రస్ చెప్పండి
@achannaborelli727819 күн бұрын
అడ్రస్ ఎక్కడ సార్
@SyedMeraz760 Жыл бұрын
DMD muscular dystrophy patient please help me treatment age 23
@foryouall3315 Жыл бұрын
Same age and same problem
@Rajesh-ox9bz Жыл бұрын
Same problem😢
@akashdeepmaurya4724 Жыл бұрын
Is Myotonia congenita different from dystrophy?
@DanishBhatti_MD Жыл бұрын
In myotonia congenita, unlike myotonic dystrophy, there is no element of progressive muscular weakness and wasting, cardiac disease, eye abnormalities, endocrine disturbances, or dementia. The life expectancy is the same in patients with myotonia congenita, both dominant and recessive, as in normal individuals.
@donnalynn28 ай бұрын
@@DanishBhatti_MD Can I trade the Myatonia Type II I have for this? It sounds like a dream!
@rosefba24558 ай бұрын
@@donnalynn2 my daugher also. Can you disscuss with your experince. My daughter age 19
@muhammadyusufhayrullayev74987 ай бұрын
can you help me plase number later @@DanishBhatti_MD
@rameshkannarameshkanna752210 ай бұрын
Please any treatment DMD ducenne Muscular Dystrophy
@awsomeyesim895910 ай бұрын
Im suffering from myotonic dystrophy doctor 💊 eption for relaxation.. but i want to cure completely... Im not science student.. i live in village from india.. if any specialist reading coment please replay me 😣😣
@donnalynn28 ай бұрын
Honey, they've been looking for a cure since it was first found. You also need to realize there so many different types of MD with their own challenges and research. You need to do a search on your particular kind and see if they are doing drug trials or have any promising treatments. I'd love to have either one. For me it's sit and watch your muscles waste away with no hope.
@awsomeyesim89598 ай бұрын
@@donnalynn2 mam eption 💊 tablet maybe working for me but its not fastly work taking time and neurologist specialist not giving me proper ansur thats why im confused and depressed about it😣😣
@rosefba24558 ай бұрын
My daughter alsp myotonic type 1..we are from india
@awsomeyesim89598 ай бұрын
@@rosefba2455 whats her age. And and what kind of tritment you are taking please tell me all about it because im suffering alo and we can look some way for living better life
@awsomeyesim89598 ай бұрын
@@rosefba2455 go neurologist spaslist.. please go it as you possible because i know the pain