Who had a parent with MD? Who didn't? - Muscular Dystrophy Message Board

michigani · 08-07-2008, 12:41 PM

I'm plunging back into my own research again after taking a couple of years off. I'm wondering who, like me, inherited their MD from a parent or grandparent or has another relative with the condition. I seem to be in the minority, inasmuch as I had a father with Limb-Girdle and now I have the exact same symptoms. Mine is almost certainly Dominant unless by some incredible chance my mom is an unsuspecting carrier thus giving me a recessive form of MD.

I've had this need to be proactive in my diagnosis and treatment. It makes me feel like I'm doing something.

CJs Mom · 08-07-2008, 08:11 PM

Hey Mark,
Neither my husband or I have a family history of MD, so this is all brand new to us with Caleb, but I understand where you're coming from trying to get all the information possible. We are currently trying to get Caleb into a LGMD Characterization Study to determine exactly which type LGMD he has, and it is open to all age groups. If we get into this study it will be a very long trip for us, but, like you said, at least I feel like I'm doing something which may help in some way!
have a great one!
Lori

Madalot · 08-08-2008, 06:37 AM

Mark -- an interesting question you pose here.

For me, my father was diagnosed with Myasthenia Gravis in the late 1970's. His main problem was his eyes. He was on the standard medications for MG and for the most part, had his symptoms under control until his death in 2000. He died from respiratory failure that was attributed to a side effect of a heart medication. We'll never know for sure at this point though.

My mother was never diagnosed with anything, but I am convinced she had something wrong (whether it was an MD or not I don't know). She was a very active woman until her late 30's/early 40's when she suddenly became very weak and tired all the time. She stopped doing most of her activities and stayed home most of the time. If she did go out and needed to walk, she became very tired almost immediately and had to stop and rest a lot. Like I said -- she was never diagnosed but it seems like she may have had some kind MD. Unfortunately, she died in 1987 so there's no way to find out.

nodakr144 · 08-10-2008, 11:02 AM

Neither of my parents nor anyone in the immediate family has muscular dystrophy. I participated in the LGMD characterization study a couple of years ago, and my parents were also tested as part of the study. I have LGMD2E, which is an autosomal recessive form of LGMD, and my parents are both carriers. If you haven't checked into the characterization study, I would encourage you to do so. More information can be found at [url]www.clinicaltrials.gov[/url].

michigani · 08-12-2008, 06:06 PM

Quote:

Originally Posted by nodakr144

Neither of my parents nor anyone in the immediate family has muscular dystrophy. I participated in the LGMD characterization study a couple of years ago, and my parents were also tested as part of the study. I have LGMD2E, which is an autosomal recessive form of LGMD, and my parents are both carriers. If you haven't checked into the characterization study, I would encourage you to do so. More information can be found at [url]www.clinicaltrials.gov[/url].

Thanks. I've done EXTENSIVE testing and studying on my own as well. I participated in the NIH MD study in Washington in 2005. Spent months tracing my family tree back (10 generations to the late 1700's) and found no evidence.....only my dad. (Many of my forefathers lived to be very old men). I appreciate the ideas though.

Mark