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Old 06-16-2010, 05:02 PM   #1
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Join Date: Dec 2005
Posts: 38
1stxmom HB User
Unhappy extreme muscle weakness

Hi I am 29 year old female. I am also a triplet. I am really frustrated because no one seems to know what is wrong with me. My muscles are really weak. I didn't learn how to walk until I was 2 1/2. I cannot climb stairs, get up off the floor without help or run. My brother and sister (triplet) do not have any problems. I really need answers because I feel like I am getting worse. I am always tired and my muscles stay stiff. I have seen numerous neurologist and they all say it is a type of congenital myopathy but they do not know what type. I have a 4yr old little boy who seems completely healthy. My pregnancy was tough. I went into labor many times starting at 26 weeks. When they tried stopping my labor they gave me Magnesium Sulfate which temporarily paralyzed me. Do my symptoms sound similar to anyone who has a diagnosis? Please give me ideas of what to do!!! I am tired of everyone thinking I don't exercise enough.

 
Old 06-17-2010, 05:24 AM   #2
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Join Date: May 2010
Location: S.A.
Posts: 142
mandy37 HB Usermandy37 HB Usermandy37 HB Usermandy37 HB Usermandy37 HB Usermandy37 HB User
Re: extreme muscle weakness

Hi there

I can only speak for myself. My symptoms started when I was 19 with very subtle muscle weakness and today 19 years later I cannot get up unassisted, walk unassisted, cannot run at all of course, have protruding scapula's, "botbelly" and now and then extreme muscles cramps.

No-one else in my family has MD and I'm the only one with this, both my kids are fine as well. I also had trouble in pregnancy with both my kids being born prem.

I'm one of those ppl that do not attend dr's rooms for any further consultations but there is ppl on this site that can be more of assistance

I hope you get your answer

Mandy

 
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Old 06-17-2010, 05:38 AM   #3
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mandy37 HB Usermandy37 HB Usermandy37 HB Usermandy37 HB Usermandy37 HB Usermandy37 HB User
Re: extreme muscle weakness

Quote:
Originally Posted by 1stxmom View Post
Hi I am 29 year old female. I am also a triplet. I am really frustrated because no one seems to know what is wrong with me. My muscles are really weak. I didn't learn how to walk until I was 2 1/2. I cannot climb stairs, get up off the floor without help or run. My brother and sister (triplet) do not have any problems. I really need answers because I feel like I am getting worse. I am always tired and my muscles stay stiff. I have seen numerous neurologist and they all say it is a type of congenital myopathy but they do not know what type. I have a 4yr old little boy who seems completely healthy. My pregnancy was tough. I went into labor many times starting at 26 weeks. When they tried stopping my labor they gave me Magnesium Sulfate which temporarily paralyzed me. Do my symptoms sound similar to anyone who has a diagnosis? Please give me ideas of what to do!!! I am tired of everyone thinking I don't exercise enough.

 
Old 06-17-2010, 07:55 AM   #4
Senior Member
(female)
 
Join Date: May 2007
Location: Florida
Posts: 203
NP74 HB UserNP74 HB UserNP74 HB User
Re: extreme muscle weakness

Hey there,

I am sorry you can't get a definite diagnosis for whatever it is you suffer from. I have LGMD 2I and was one of the "lucky" ones who could get a diagnosis through a muscle biopsy and genetic blood test. Your symptoms sound very similar to what I think most of us here have or are experiencing. I was and still am a very active person, but I was always the slowest in school etc. Right now I am at a point where I can still walk, but need help getting in and out of low chairs etc, getting up from the floor is completely out of the question! I still exercise a lot, I spend about two hours every day working out in a therapeutic pool, and most nights I ride an exercise bike for a while while watching tv. I do not fatigue and as long as I do things at my own speed I can keep going forever. This is not the case for some people with MD.

I guess what I am trying to say is that no two people with MD are the same even though we all have many common issues.

As Mandy wrote, she has chosen to not follow up with Dr's etc, I am the opposite way. I am not going to give up until someone finds a cure for this curse of a disease, if I am going down I will be going down fighting, so I try to read as much as I can about the research etc regarding my condition. I am sure my Dr's think I am a pain in the you know what. No they are all great and 100% behind me. We all deal with this differently, but we all support each other on this board.

I am not sure this is what you wanted to hear, or read ;-) If you are in the US, have you contacted your local MDA office? Have you asked your Dr for a referral to Mayo or one of the other "big" hospitals? They may be able to give you more answers.

P

 
Old 06-17-2010, 04:41 PM   #5
Junior Member
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Join Date: Dec 2005
Posts: 38
1stxmom HB User
Re: extreme muscle weakness

Thanks to both of you for your response. I called today to get a referral to another neurologist so maybe I can finally get some answers. I will keep you all updated with the results.

 
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