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Old 06-23-2011, 04:50 PM   #1
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Centro-nuclear myopathy

I am 42 years old and just diagnosed about 8 months ago. I am extremely tired and experience weakness in the thighs and biceps. My husband thinks I am just lazy. I need to do more, I am a full time college student in my last year of a five year degree for teaching. Carrying a back pack is alot work...He thinks I should do more...by the way my gpa is 3.56 . I also have a 16 year old daughter and I am the Tutor co-ordinator for children 1 st grade thru 6th grade I am in charge of 7 other tutors. I co-ordinate Mondays from 5-8:30pm during the school year. I also do all the grocery shopping and meal preparation at home. I just want to scream I really am doing all that I can...

I am just so tired...of trying to defend an illness I did not ask for or do anything to cause...Any advice or similiar situation.

 
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Old 06-24-2011, 01:06 PM   #2
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Re: Centro-nuclear myopathy

Hi tmb,

I have an extensive database of 70+ types of muscular dystrophies. I didn't remember yours, but upon checking, I do have a little info:

Centronuclear Myopathy
AKA: Myotubular Myopothy
Short name: CNM
Inheritance: Dominant
Mutant Gene: Dynamin 2 (DNM2)
Average Age at onset: Adoles-Adult
Muscles affected: Distal Legs & Respitory
Heart affected: ?
Lungs affected: Sometimes
Progression: Slow

You are not lazy! I am a 50 year old male with Limb-girdle MD. I was diagnosed at 41. I do all I can around the house since I left my job 6 years ago. Sometimes I go until I almost drop. Even then it doesn't seem like much. I cook most meals, vacuum, dust and do do small repairs. But I can barely stand on my feet at this point. I always feel like I'm about to fall.

Like my wife, your husband is trying to deal with this too. Hopefully he begins to understand. I've always felt that nobody, even my closest loved ones, can fully understand the fear and frustration of having this illness in your body from which there's no escape.

Exercise does not help people with MD. it just breaks down muscle cells that cannot be replaced (as they are in healthy people).

It sounds like you are doing an incredible amount. Good for you! Seriously. Post here whenever you need to vent or talk. There are many many good people here who completely understand exactly what you're going through.

Mark

Last edited by michigani; 06-24-2011 at 01:07 PM.

 
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Old 06-24-2011, 02:44 PM   #3
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Re: Centro-nuclear myopathy

Quote:
Originally Posted by michigani View Post
Hi tmb,

I have an extensive database of 70+ types of muscular dystrophies. I didn't remember yours, but upon checking, I do have a little info:

Centronuclear Myopathy
AKA: Myotubular Myopothy
Short name: CNM
Inheritance: Dominant
Mutant Gene: Dynamin 2 (DNM2)
Average Age at onset: Adoles-Adult
Muscles affected: Distal Legs & Respitory
Heart affected: ?
Lungs affected: Sometimes
Progression: Slow

You are not lazy! I am a 50 year old male with Limb-girdle MD. I was diagnosed at 41. I do all I can around the house since I left my job 6 years ago. Sometimes I go until I almost drop. Even then it doesn't seem like much. I cook most meals, vacuum, dust and do do small repairs. But I can barely stand on my feet at this point. I always feel like I'm about to fall.

Like my wife, your husband is trying to deal with this too. Hopefully he begins to understand. I've always felt that nobody, even my closest loved ones, can fully understand the fear and frustration of having this illness in your body from which there's no escape.

Exercise does not help people with MD. it just breaks down muscle cells that cannot be replaced (as they are in healthy people).

It sounds like you are doing an incredible amount. Good for you! Seriously. Post here whenever you need to vent or talk. There are many many good people here who completely understand exactly what you're going through.

Mark
Mine is suppose to be a very muscle disease on the spectrum. However when you have it and no one else around does it does not seem mild. I feel blessed to be in Texas because of the weather. I am from upstate New York and ice and snow would be very scarey. My home is flat and I have not fallen in months..I am trying to get my degree in teaching ec-6th grade...I love school aged children...the problem for me is getting on the floor and getting up....or lifting anything...I don't want to sound like a complainer...I know it could be much worse...it is just so frustrating because there really is nothing that can help this condition..I am just tired of stuffing my feelings about it...Thank you for respo nding...Tammy-in Texas

 
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Old 07-28-2012, 08:15 PM   #4
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Re: Centro-nuclear myopathy

I have not been on the boards in quite awhile, I just revisited a post from a year ago. I recieved my degree in May 2012. I did my final year as a student teacher in a third grade classroom. The most wonderful time yes, I was tired and at first my legs hurt and my feet hurt. The classroom had a rough group....a very tough group. Turns out what students need are people who care, not crawl around the floor....Thank goodness, trying to find a job currently...I just wanted to check in and update my status....

 
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