I am having genetic testing for Myotonic Dystrophy Type 1. Actually I am expecting the results today or tomorrow and am very anxious. Since July I have been on short term disability leave from my job because my symptoms are so bad they prevent me from working. (And I just have a desk job, so that's very frustrating!)
Overall I have had mild symptoms when I was about 13 years old. Then everything started progressing more severley over the past 5 years. And actually more severe over the past 3 months.
Just like others, I too exhibit the following symptoms; muscular weakness in feet, legs, and arms. I need to use handrail for staircases, but also have difficulty bringing packages and groceries up to my apartment. My hand tremors are so severe that I cannot use knifes to cut vegetables, I can't apply mascara to my eyes, and my ankle strength has always been poor, so I've never been able to wear high heels of any kind. (Thought women could relate to the last two!) Also have a hard time texting on my cell phone. I need to use a wheelchair for vacations that require tons of walking, like Disney World. Also get worn out just walking through the mall for an hour.
Daytime fatigue has been an issue for me for months now. By 2pm I am completely zapped and can't even keep my eyes open. So daily naps are a must now.
My jaws are tiring out when I eat, to the point that I have to stop eating and let my mouth rest. So I've been eating less, or other times I just take a really long time to eat. (Because I am not leaving a crumb of cheesecake on my plate!!)
Does anyone else experience problems with cognitive thinking? I have read that is a symptom of myotonic muscular dystrophy, and it's the main cause of why I was put on medical leave. A few examples; I wrote the word 'milk' on a grocery list 3 times. I pulled a roasting pan out of the oven without thinking to put on oven mitts, so I burned myself. While cooking I am leaving out steps, or sometimes I forget to set the timer for something I am cooking. When I was out driving, I ran through an intersection (stop sign) without realizing it. Only knew I did it because my husband was with me and he said something after I was halfway through the intersection. I love to read books, and find myself rereading paragraphs because I can't retain information.
I just feel like I'm mentally slower. For years I have played online card games with other people, and never had an issue. Well, awhile ago someone at the table asked the host to kick me out because I was slow.
I was so depressed, because I knew I was taking longer to figure out which card to discard, and normally that would never an issue. But it is now.
At work I was going over hours on projects, and my quality went downhill because I couldn't focus on what I was doing.
I just had an MRI of the brain, and it was normal. So I see my neurologist in 4 weeks to see if my 'absent mindedness' is related to my muscular disease.
If you're still with me, thanks for reading my story! I have been lurking on this board for awhile and it helps to know that others are going through what I am.