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Old 08-31-2011, 09:55 AM   #1
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diznee25 HB User
Can anyone relate?

Hi everyone!

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.

diznee25

 
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Old 09-01-2011, 06:42 AM   #2
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diznee25 HB User
Re: Can anyone relate?

I want to continue and fill in my backstory, because this takes me back to when I was about 12 years old.

As a child I had always been scrawny, clumsy, and not athletic in the least. When I was 12 yrs. old I was always told I walked funny, that I walked up and down staircases weird, and people always assumed I was nervous because my hands shook all the time. And a few family members even thought I may have scoliosis, but my parents never looked into it.

Fast forward to my 20th birthday. There was a cosmetic procedure I had always been interested in, so I scheduled a consultation appointment with a plastic surgeon. During that visit he listened to my heart and told me that I had a heart murmur.

That was the start of discovering all these medical issues that would pop up. My heart murmur was an ASD. Means I was born with a hole in my heart, and no one discovered it until I was 20. The hole ended up being so large that my only option was open heart surgery, so I did that.

During all the heart procedures it was realized that I did have scoliosis, and it was bad. After my heart surgery I saw an orthopedic doctor. He had me do basic stuff, like walk on my tip toes, which I couldn't do very well. He scheduled me with a neurologist specializing in neuromuscular disorders. (By the way, I was diagnosed with an 'S' shaped spine. As of now my Lumbar curve is 43 degrees, and my thoracic curve is 54 degrees.)

The neurologist did an EMG test which confirmed a clinical diagnoses of a degenerative muscular disease. But they couldn't figure out what it was. This was back in 2002. At this time my symptoms were so mild, and the disease was progressing so slowly that no one was concerned. So i quit going back and decided just to live with it.

So in 2007 is when I noticed a major progression of my symptoms. (This is where I started in my first post.) At this time I am living in Maryland so I am very lucky to be dealing with John Hopkins to give me a diagnoses.

Whatever disease I have, it really does effect just about every aspect of my life. And I have been told my neurologist that eventually I will be wheelchair bound, they just don't know when. So everyday that I can walk I never take it for granted.

The one frustrating thing is that I am so young. At 32 I feel like an old person. Not just because of my muscular disease, but I have another heart condition that requires me to take beta blocker pills for life. I have grandparents who are in their 80's who are healthier than me! Oh well, it's not that bad. But sometimes it gets to me....


diznee25

 
Old 09-01-2011, 11:54 PM   #3
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mandy37 HB Usermandy37 HB Usermandy37 HB Usermandy37 HB Usermandy37 HB Usermandy37 HB User
Re: Can anyone relate?

Hi

I first want to compliment you on your sense of humour. That is what keeps me sane so now and then

I don't have the same MD as you but I'm starting to get wheelchair bound slowly but surely. I'm 39 but also started after my 30's with more severe symptoms (diagnosed when I was 19)

The memory lapses. I started to get "weird” episodes when I "blanked out" for a min or two not grasping when someone talk to me not understanding what they were saying. This was 3 years ago

I was diagnosed with a form of epilepsy that is being treated. Maybe you should go for the same kind of check-up that could be some sort of epilepsy attack. You never know

Keep on smiling even if it's only for yourself.

 
Old 09-01-2011, 11:57 PM   #4
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mandy37 HB Usermandy37 HB Usermandy37 HB Usermandy37 HB Usermandy37 HB Usermandy37 HB User
Re: Can anyone relate?

Hi

I first want to compliment you on your sense of humour. That is what keeps me sane so now and then

I don't have the same MD as you but I'm starting to get wheelchair bound slowly but surely. I'm 39 but also started after my 30's with more severe symptoms (diagnosed when I was 19)

The memory lapses. I started to get "weird” episodes when I "blanked out" for a min or two not grasping when someone talk to me not understanding what they were saying. This was 3 years ago

I was diagnosed with a form of epilepsy that is being treated. Maybe you should go for the same kind of check-up that could be some sort of epilepsy attack. You never know

Keep on smiling even if it's only for yourself.

 
Old 09-02-2011, 05:49 AM   #5
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Join Date: Jul 2011
Location: Annapolis, MD
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diznee25 HB User
Re: Can anyone relate?

mandy37,

Thank you for posting! I'm sort of having the same memory lapse you mentioned.....Someone will be talking to me about some story in the news, or giving me instructions at work, and I'm not retaining what they're saying, even in the moment they are speaking. I'll ask them to repeat themselves and I try hard to concentrate on what they are saying.

I see my neurologist in a couple weeks, so I'll mention my concern about this "brain fog." Not really sure what to call it!

Yea, you and I are similar in how our muscular dystrophy is progressing. You said you were diagnosed at 19; my clinical diagnoses of "unknown" muscular disease was at age 22. And since I entered my 30's, my symptoms are getting worse. Makes me wonder what's in store for me by the time I hit 50! I try not to worry about the future, because it's something I have no control over. But it does cross my mind every now and then.

If it's not too personal, can I ask what form of muscular dystrophy you have?

Thanks again for posting! It's nice to know someone else who is going dealing with the same thing I am.

Thanks,
diznee25

 
Old 09-05-2011, 01:22 AM   #6
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mandy37 HB Usermandy37 HB Usermandy37 HB Usermandy37 HB Usermandy37 HB Usermandy37 HB User
Re: Can anyone relate?

I have a combination of FHSMD and Limb girdle - in other words my body doesn't seem to know which part should be working or not : )

I'm also scared in a way for what the future hold and the fact that I will need someone to help me on a permanent basis.

I do get angry that I have MD and on top of that epilepsy as well. So unfair!!
I’m thinking about going to rehab to help me use a wheelchair that I can use when no-one is around.

I’m sure your neurologist will be able to help you and that this memory problem not be part of the MD and can be fixed.

On the positive side you can also use this memory lapses to get out of chores you don’t want to do and “forgot” about.

M

 
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