Myotonic Dystrophy:just diagnosed - Muscular Dystrophy Message Board

Monnie45 · 03-28-2009, 02:34 PM

Hi, I am frightened. I was just diagnosed with myotonic dystrophy. My father had it although at the time it was not diagnosed. My brother has it. I am not feeling a lot symptoms although I had catract surgery about six years ago. I have difficulty climbing stairs although I live on the bottom floor of a condo building and don't need to climb stairs. What should I expect . I am 63years old and don't want to be dependent on my kids.

michigani · 03-29-2009, 10:33 AM

Hi Monnie,

I'm a 48 year old male with Limb-Girdle MD. I was diagnosed at 41 after suspecting it for 2 years. My father had it, so I knew what was happening. I'm sorry that it's happening to you. I know the fear and frustration. With that being said, I try to keep upbeat and optimistic.

The best advice I can give you is to contact your local MD Clinic if you've not done so yet. They are experts and can offer compassionate, helpful advice. Also, they can provide you with testing, equipment, etc. I'm sure there is an MD clinic in Maryland or at least within an hour of you.

Next, post here whenever you feel you need to talk. There are dozens of adults here that are going through what you are and it helps to talk, vent and share similar stories.

I wish you the best,

Mark

Monnie45 · 03-30-2009, 04:20 PM

Mark, thanks for your info. I did contact the MD in the area and getting information from them. You mentioned you had Limb Girdle, is that the same, what are your symptoms and how are you doing. As I said, I have some difficulty with stairs, had cataract surgery at 57 and can't really run but I have also been diagnosed with Meniere's and don't always feel stable. Thanks.

Madalot · 03-31-2009, 09:35 AM

Hi Monnie --

I thought I'd chime in here to let you know that you aren't alone in all of this. I have a very similar story to Mark -- not exactly -- but similar.

I was diagnosed with a form of Muscular Dystrophy in my mid to late 30's. At the time of the diagnosis, it was almost liberating to me because I had been a weakling all my life and had endured a lot of criticism from friends and family. It was almost a good thing to find out that there was actually something medically wrong with me and that I just wasn't lazy.

I'm now almost 47 (in two weeks) and have an official diagnosis of Limb-Girdle MD, like Mark. Exactly which LGMD I don't know, but have opted NOT to undergo more testing at this time since knowing won't change my treatment or prognosis that much.

Mark had good advice and by contacting MD, you'll have access to information and services that you may need at some point.

Keep posting when you want -- there are quite a few of us here that understand what you're going through.

Kathy

michigani · 04-02-2009, 08:11 AM

Hi again Monnie,

In my case, and in many adult cases of MD, the problem starts with being slower than everyone else your age. Slower running, slower climbing stairs, and difficulty rising from a low sofa or chair. You start to get a feeling that "this isn't normal" and that your difficulty goes beyond "I must be out of shape".

For me I knew something was bad wrong one day at work when I was 39 and climbing up 40 stairs to my 3rd floor office. My 65 year old boss went flying by me 2 steps at a time. That was the day I knew I had to talk to my doctor.

Typically there's embarrassment, fear, frustration, all that stuff but once you're diagnosed it seems a bit easier. You at least know what you're facing and your friends and family finally understand that you're not just lazy or out of shape.

Hang in there and post anytime.

Mark