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lgmd and my experiences....

Posted , 8 users are following.

gupta_ripu2000
gupta_ripu2000

Dear,

I am 29 years old and in year 1995, I felt something wrong is happening to my strength.

Later on in 1999 biopsy confirmed it was lgmd and till date my every dream is ruined because of this.

Every winter it makes me more helpless .

Raising from chair, no stairs, no raising arms, walking and gradually fell down , major problems I am facing.

I want to share my experience with other people about going to toilet etc. to wear clothes yourself, to help them

please reply back , I researched lot on my problem and want to fight with it.

lgmd means limb girdle muscular dystrophy for others....but

\"love greatest mistake done\" for me.

THINK & THANKS

1 like, 5 replies

5 Replies

  • Guest
    Guest

    Posted

    [quote:7f95235ef6=\"gupta_ripu2000\"]Dear,

    I am 29 years old and in year 1995, I felt something wrong is happening to my strength.

    Later on in 1999 biopsy confirmed it was lgmd and till date my every dream is ruined because of this.

    Every winter it makes me more helpless .

    Raising from chair, no stairs, no raising arms, walking and gradually fell down , major problems I am facing.

    I want to share my experience with other people about going to toilet etc. to wear clothes yourself, to help them

    please reply back , I researched lot on my problem and want to fight with it.

    lgmd means limb girdle muscular dystrophy for others....but

    \"love greatest mistake done\" for me.

    THINK & THANKS[/quote:7f95235ef6] umm hi i am 12 years old and i have lgmd what u have jus sed is what i have felt to

    i got diagnosed with muscular dystrophy at the age of 10 and i have been so determind to fight agaisnt it as i am very active and i used to play alot of football but i cant play as good now but im wrighting to u to let u no that ur not the onli 1 hu feels the way u feeel it has ruined mi life in a way and sometmes i feel like it has just defeated me and im not gonna let it do that so us lot with muscular dystrpohy we will jus keep fighting on and on and i hope that 1 day we get the cure that we have all been waiting for.

    Kiera Santry .. Uk

  • Guest
    Guest

    Posted

    My wife is diagnosed with lgmd, calpainopathy type exactly. After extensive research we have started on 1. Antioxidants in natural form to slow the autoimmune system attack on muscles 2. Homeopathy medicines to manage emotional causes of the disease. 3. Regular pranayam and yoga. 4. Mutivitamins in natural form to strenghthen bone structure. 5. Spleen correction herbally as it was stipulated in some unnani and chinese medicine journals that this disease is caused by spleen disorder.Also read a recent medical journal which said that spleen can also take over role of stem cell producer for body. Giving it a try as it is harmless herbal preparation. 6. Also heard that mono atomic gold found in morning dew can also cure lgmd but hasnt given it a try yet.

    Result: There hasn't been any noticeable increase in weakness of muscles in last one year. Instead overall energy level has improved but no improvement in range of motion of muscles.according to docs it is still very encouraging. ur story is welcome. *****-at-*****

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  • Beymen
    Beymen

    Posted

    Hi I suffer from LGMD I was diagnosed with this at the age of about age of 18 it was noticed when my shoulders drooped and could I could not lift my arm to combe my hair, prior to this during my school years I was very active in all sorts of sports but mainly boxing, I was school boy champion of south east England in 1969, I have certificates for discus and javelin throwing.

    After leaving school and starting work I stopped my sports activities and it was soon after that my mother took me to my doctor to see why I could not lift my arms to combe my hair, this changed my life forever after seeing a nuorologist and was diagnosed with LGMD, he could not tell me then what was going to happen to me how fast the condition would progress, will I end up in a wheel chair or anything else, all he could say was there is no cure for this condition and that I should carry on doing light exercises just to keep the muscles and joints in working order for as long as I can, which I have done over the years.

    I'm still not in a wheelchair, but recently I have fallen more frequintly so I try to be more careful when walking, I'm now doing other exercises given to me by the physiotherapy dept. which seems to have helped me not to fall as much. I will try to fight on not to be in a wheel chair to the end.

    I'm now 62 and in my situation I think my life has not been completely ruined, at the end of the day, I fought on, I worked, I had my own businesses for over 35 years, up untill 2 years ago I had to stop it was getting too hard for me to continue.

    One thing I learned was DO NOT GIVE UP, ADAPT YOURSELF AND BE POSITIVE.

    • Rabbit1987
      Rabbit1987 Beymen

      Posted

      Hello everyone,

      I felt some kind of relief after i've stumbled this here page. I am also suffering the same symptoms as you fellows have had. I am a 28 yo male from the Philippines and i am having a hard time coping with everything that has happened to me. Reading your stories and learning from your experiences makes it a bit comfortable, to be with those who knows what i am feeling and what i am going through.

      Beymen, if it is okay with you we can exchange emails. I feel so depressed and hopeless. I don't know anything else to write, but i feel not alone with you guys, and have felt your pain.

  • Kanary
    Kanary gupta_ripu2000

    Posted

    I too have limb girdle and would like to fight it but have know idea where to start no matter how much i research i give up when i don't see results right away

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