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danat

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Jul 8, 2006
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Learn about ALS
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Two Harbors
Hello,

This is my first post. My husband has just been told that he probably has ALS. We're waiting to see if he gets better, after using the drug Humira. He, in March, became extremely short of breath upon the slightest exertion. After months of Dr. appointments, the neurologist found universal nerve degeneration. Our Rheumatologist really thinks that the Humira damaged him, however our neurologist said that there has not been a single reported case of Humira causing nerve degeneration. So now, we sit and wait. He has a multitude of symptoms, including extreme weakness, and shortness of breath, and some difficulty swallowing. I'm scared because ALS that presents with SOB can be soo bad. What can we expect?
 

lunarruna

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May 20, 2006
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CALS
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xx
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Danat....Sorry to here that you are probably in the same boat as the rest of us here. This is a great forum though, as I am sure you have found. You first question...'what can we expect' is a huge one, as there is so much involved with ALS. One tool that is great on this forum is the "Search' option in the header...you can type in any words or phrases and it will find all of the previous discussions of that topic for you. (For example: I typed in breathing problems and 60 messages came up.) So as you are getting educated about what is ahead, you can search any topic. My husband cant eat any more (swallowing difficulties)-- and so he has gotten a PEG feeding tube in his stomach...I was very nervous about taking care of the tube at first, but I have learned so much about the care and maintenance of the feeding tube from other folks on the web here....took the fear away to know so many others were managing it.
As you probably know, ALS affects everyone differently, so is often hard to generalize, but you can read many people's story and journeys here for some perspectives and support. Good Luck and keep in touch with us...
Beth
 

danat

New member
Joined
Jul 8, 2006
Messages
5
Reason
Learn about ALS
Country
US
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Minnesota
City
Two Harbors
Thank you Beth,

I will use the search engine. I'm really glad this forum is here, otherwise I'd feel completely isolated.
 
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