lewisy
10-30-2005, 07:11 PM
Hello All,
My mum was diagnosed with Limb-Girdle Muscular Dystrophy at approximately the age of 24, a couple of years after i was born. However, there were evident symptoms from early on in her life where she would randomly fall over. As her son, I'm naturally concerned about whether this is an inherited disease as I am soon to have my own child. My mum was advised by her doctor that both me and my sister don't have the disease however i'm not entirely sure how it manifests itself or whether i'm a potential carrier for the condition.
I hope that more awareness to this condition hits the mainstream like cancer research etc. I feel muscular dystrophy in this country is not known by the general public, and most people think of MS! which is a shame because the more people that can give to the charity for MD the closer they will become to finding a cure.
Thanks for your time.
Kind Regards, Lewis
My mum was diagnosed with Limb-Girdle Muscular Dystrophy at approximately the age of 24, a couple of years after i was born. However, there were evident symptoms from early on in her life where she would randomly fall over. As her son, I'm naturally concerned about whether this is an inherited disease as I am soon to have my own child. My mum was advised by her doctor that both me and my sister don't have the disease however i'm not entirely sure how it manifests itself or whether i'm a potential carrier for the condition.
I hope that more awareness to this condition hits the mainstream like cancer research etc. I feel muscular dystrophy in this country is not known by the general public, and most people think of MS! which is a shame because the more people that can give to the charity for MD the closer they will become to finding a cure.
Thanks for your time.
Kind Regards, Lewis
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michigani
11-01-2005, 05:20 PM
Lewis,
My dad was diagnosed with LGMD at 35. I was diagnosed at 40 but in reality I was tripping and weak for many years before and tried to ignore it. You probaly know that Limb-Girdle MD can be inherited dominant or recessive. LGMD type 1 being dominant and LGMD type 2 beign recessive. Do lots of on-line searching and it will be more clear what your chances are of having it or passing it on. I have kids so I appreciate your fears. So far they are okay at 13 and 16 years old.
Freinds, and co-workers always think I have MS as well. It's frustrating but I patiently correct them.
Read my other Muscular Dystrophy posts. I too am on a long diagnostic journey trying to figure out which form I have. But I'm hopeful and I think I'm close to some answers.
They can figure out a lot from bloodwork and even more through a small muscle biopsy. It sounds like you live in England. Does MDA have any clinics or programs there?
Best of luck to you and your family.
Mark
My dad was diagnosed with LGMD at 35. I was diagnosed at 40 but in reality I was tripping and weak for many years before and tried to ignore it. You probaly know that Limb-Girdle MD can be inherited dominant or recessive. LGMD type 1 being dominant and LGMD type 2 beign recessive. Do lots of on-line searching and it will be more clear what your chances are of having it or passing it on. I have kids so I appreciate your fears. So far they are okay at 13 and 16 years old.
Freinds, and co-workers always think I have MS as well. It's frustrating but I patiently correct them.
Read my other Muscular Dystrophy posts. I too am on a long diagnostic journey trying to figure out which form I have. But I'm hopeful and I think I'm close to some answers.
They can figure out a lot from bloodwork and even more through a small muscle biopsy. It sounds like you live in England. Does MDA have any clinics or programs there?
Best of luck to you and your family.
Mark
lewisy
11-02-2005, 03:20 PM
Hi Mark,
Thanks for your response. Yes I do live in England. I didn't realise that the condition could remain dorment for some many years with such a late onset. In reality I am probably very scared to find out. Ignorance in this case is bliss, however on the other hand I wouldn't want to pass this condition to my children. I have scoured the net for explanations, of which explain what you mentioned regarding the recessive genes and inheritance.
I really hope I don't have the condition, the only noticable things I recall that could indicate it was falling over after a very long PE sprint at school (single incident), I don't know whether that was sheer exhaustion or indicative of an underlying condition, and occassionally when walking around the office at work my left foot catches on the floor as though i don't lift it up high enough. Very subtle and I hope nothing to worry about, but with my mum's condition in the back of my mind, it makes me think twice. As someone posted the 'floppy foot' scenario which made me really scared since i had experienced the same. Not that frequently though, maybe i'm just scaring myself. I'm 25 now, I guess whatever happens is gods will.
Thanks again for your reply.
Kind Regards,
Lewis
Thanks for your response. Yes I do live in England. I didn't realise that the condition could remain dorment for some many years with such a late onset. In reality I am probably very scared to find out. Ignorance in this case is bliss, however on the other hand I wouldn't want to pass this condition to my children. I have scoured the net for explanations, of which explain what you mentioned regarding the recessive genes and inheritance.
I really hope I don't have the condition, the only noticable things I recall that could indicate it was falling over after a very long PE sprint at school (single incident), I don't know whether that was sheer exhaustion or indicative of an underlying condition, and occassionally when walking around the office at work my left foot catches on the floor as though i don't lift it up high enough. Very subtle and I hope nothing to worry about, but with my mum's condition in the back of my mind, it makes me think twice. As someone posted the 'floppy foot' scenario which made me really scared since i had experienced the same. Not that frequently though, maybe i'm just scaring myself. I'm 25 now, I guess whatever happens is gods will.
Thanks again for your reply.
Kind Regards,
Lewis
bearcats03
12-03-2005, 12:25 AM
My younger brother has Duchenne Muscular Dystrophy. He is 27 years old and doing okay cosidering he had the worst MD of the 40 types. The doctors are amazed that he is still living. Most people with this type die by late teens-early 20's. Duchenne is carried through females but only affects the males. I am a female and a carrier of the disease. My mom also had twin sons that are older than me and they were lucky the disease did not affect them. I am 100 percent a carrier (my gene mutation is exactly like my younger brothers), but since I am a female I didn't get the disease, but carry it. If I had sons then they would have a 75% chance of being affected also. Thanks GOD I was blessed with two girls (who may be carriers of the disease also). Hopefully my girls are not carriers and this deadly disease does not hurt any one else in our family. I am not having any more children. I don't think I would be fortunate enough to have another girl. I would never want to watch my child suffer. My brothers life has been so hard, and watching him go through it is heartbreaking, knowing that nothing can be done to cure him. We have been told from age 5 that eventually there will be a cure, but not is his lifetime. Hopefully LGMD is nothing like Duchenne. I only know about this type.