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ceegee

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Here is my story

My grandmother died of ALS around 18 years ago. At that time we were told it was not hereditary. She had the disease for 2 years. My mother fell in April and broke her foot. After the cast was removed her foot was not moving correctly and was weak and dragging. She went to therapy but she was not healing very fast so the doctor sent her to a neurologist. MRI's of brain and neck were negative; spine is next. Last week we saw a ALS specialist who examined her for 15 minutes and told me her preliminary diagnosis is ALS. She is having an EMG in 3 Weeks. My mom's symptoms are

right leg weakness
twitching in arms and legs
stiffness in the legs when streching (spasticity)
cramps in legs

could this be?
 

BethU

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Joined
May 11, 2008
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That is a mighty fast diagnosis, and considering that no tests have been done, I am amazed that a neuro would throw something like that at you.

Please be hopeful ... very hopeful .... for your mom. Diagnosing ALS is a long process of eliminating a ton of other things it could be. There are many, many other things to consider.

Let us know what happens.
BethU
 

Only16

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It's perfectly normal to have weakness and atrophy for a while in a limb that's been in a cast. In fact it's often expected, ESPECIALLY a leg. Remember: That leg hasn't been used this whole time! The reason our leg muscles don't atrophy is because we walk on them and use them. Remember also that atrophy and weakness go hand in hand in the atrophy -> weakness direction, though the reverse isn't true.
 

ceegee

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thanks. could you explain what you mean by reverse isn't true?
 

jmckean

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May 25, 2006
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Loved one DX
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US
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OK
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Tulsa
Hereditary - while rare, surely possible

My grandmother died with ALS about 20 years ago. Her sister's son also died with ALS. My mother died with ALS on May 11, 2007. I have 2 sisters. You can bet we're all very nervous. From mom's specialist at the MDA Clinic in Oklahoma City, we each have a 50/50 chance of inheriting this dreaded disease.

I remember my grandmothers seemed to start in her throat. She had trouble swallowing, then talking. I don't believe she lasted more than 6 months after diagnosis.

My mother's issues started with her feet. She was about 70 years old. She had a lower back injury from 20 years ago. She was told back then that she may have some issues later in life. Therefore, when she began to have trouble with her feet (arches fell, swelling) she thought it was her back. She tripped and fell a couple of times, the last time breaking her hip. During recovery, doctors were puzzled that she had a lot of trouble with her adominal muscles that made her recover very slow. When she recovered, the foot on that injured side dropped. She couldn't pick it up very well. She blamed it on the surgery. Physical Therapy was useless. Finally, she was referred to a 'Bone and Joint' Specialist in Tulsa. He did the EMG testing and checked her bloodwork. Then he scratched his head and said, 'I hope I'm wrong, but I think you have ALS'. He referred her to Dr. Beson with the MDA Clinic in Oklahoma City. Her diagnosis was confirmed. They called it a form of ALS, called Primary Muscular Atrophy. She was told she would last 3-5 years. She was in extreme denial through most of the disease's progression, which made it very hard on her family.

I believe the PMA progressed very rapidly into full blown ALS. Her feet became atrophied, hands slowly became useless and atrophied, she didn't have much trouble with twitches until the end...more like tingling in the beginning. Swelling was also an issue and trouble sleeping. Then, her lungs became affected. Hospice was very helpful and got oxygen for her. Her specialist in Oklahoma City warned her not to use oxygen, she must use a bi-pap to push the air into her lungs. They told her that her lungs would shut down otherwise. I'll never forget, she told them, 'I think that's a pretty good option....don't you?' She continued to use her oxygen. She didn't last long, once her lungs became an issue. She put herself to bed a few weeks later and was gone within one week. My mom lasted one year to the day from diagnosis. http://www.als-shirleyshope.com

I understand genetic counseling and testing can be done, but not recommended.
 

Only16

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thanks. could you explain what you mean by reverse isn't true?
Atrophy is muscle wasting / receding of muscle tissue. if you have atrophy, no matter what the cause, you are going to be weaker, as there's less muscle fiber present to do work. However, clinical weakness in the absence of atrophy seems to me like a sign more representative of a motor neuron disease, but I'm no doctor. In that second case the muscle is still there, but something is preventing it from working as it should, rather than an outstanding cause such as atrophy caused by cast disuse.
 
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