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jeremy75

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Apr 20, 2010
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Reason
Learn about ALS
Country
US
State
mo
City
LAKE ST LOUIS
i am currently working on a research paper for my A&P class in school and have found much valuable information regarding ALS, its symptoms, treatments and current clinical trials. One thing i have been yet unable to find is a rough timeline for the progression of symptoms. I fully understand that this is a sensitive and personal matter, i only wish to give an accurte protrayal of ALS, as the paper has to be written in a diary form, so the progression and onset of the symptoms is crucial for me to get this correct and accurate. I would ask that if anyone would be willing to share with me this information about the onset and deteroriation of certain aspects of this would greatly appreciated. MY HOPE IS THAT THE REQUEST IS NOT TO PERSONAL IN NATURE. I can be most easily reached by email @ [email protected]. Thank you for all consideration and help i may recieve.
 
everyone's rate of progression is different , a.l.s. goes where ever and whenever it want's to
 
Jeremy
Would rather not give you my email address but don't mind sharing our story with you. I am the primary caregiver for my wife who was diagnosed in Sept 07. We live in Barnhart, MO so we are not too far away. My wife first started noticing cramps in her hands in the summer of 06 while she persued one of her hobbies of basket weaving. She chalked it up to over doing it. Then in the fall of 06 she noticed she could not grasp a pencil as tightly as she normally would. A visit to her primary doctor for a routine checkup showned some minor aptropy in her right hand. We where refered to a orthopedic specialist who did spinal exrays looking for disk problems. When that came back OK we where sent to a nuerologist. During his initial exam his assured us that it was not ALS because she did not have any hyperactive reflexes, just the opposite, here reflexes where slower then normal. He did an EMG in his office and ordered a muscle biopsy. When he got those results he refered us to a MND specialist with Barns. This guy would not rule out ALS and had the EMG repeated as well as an ELISA blood test done to rule out any autoimune diseases. They called me at work with the ELISA results and when I heard they where negative for any antibodies I ask what that left on the table and was told ALS. Hardest thing I ever had to do was go home and tell my wife unless it was tell my two girls, that may have been harder. In Dec. 2007 we took a trip to the Mayo clinic in FL. for a second opinion and they said they could not rule out ALS but it could be Bracial Amyotrophic Dipligia (sp?). 2008 saw my wife slowing lose all use of her hands and arms with muscle atropy throughout her upper torso. In 2009 it started in on her lungs. In Jan. 09 her FVC was 98%, she lost 5% each month and now is at 28% and falling. She has lost 40 pounds and in now under 100. She has no problems swallowing or walking right now.

This is, breifly, our story. I have left out much of the emotional baggage that goes with this. Understand that each persons journey is different with ALS. I effects everyone differently and there are lots of choices as to how much you do to fight this disease. This is just how it effected us.
 
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