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Muscular Dystrophy Message Board

Spinal muscular atrophy Hello All SMA liver from PA

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Old 04-07-2012, 09:40 AM   #1
Join Date: Apr 2012
Location: Scranton, PA
Posts: 1
EaglesFan75 HB User
Smile Hello All. I have SMA.

Just wanted to introduce myself. My name is Greg. I live near the city of Scranton, PA (home of The Office). Was diagnosed with SMA between the ages of 1-2. Currently 37 years old and seem to be getting worse as the years go on. I am on Norco, a pain med, because of terrible neck, shoulder, back and arm pain that sometimes goes to my fingers. Also just started dealing with a sore hip the past few weeks. I believe mine is Type 3 - Kugelberg–Welander disease.

But I joined to see if anyone else is dealing with SMA as well. I'd like to hear your stories and get to know others who are dealing with the same thing.

We can all use a friend or two who knows what it's like right

Last edited by EaglesFan75; 04-07-2012 at 01:01 PM. Reason: title change

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Old 04-08-2012, 12:32 AM   #2
Junior Member
Join Date: Mar 2012
Location: Regina, Saskatchewan, Canada
Posts: 14
InTheVoid HB User
Re: Hello All SMA liver from PA

Hi Greg, my name's Lee and I loved The Office! Sorry to hear about your pain. My family has a history of Spinal Muscular Atrophy. My uncle has type 3a and my mother has type 3b, although some would say she has type 4 but it's still linked to the same gene. My mother also has a pain syndrome where she gets shooting\stabbing sensations all over so I sort of know what your going through. My mother was diagnosed in '96, My uncle was not diagnosed until she was but he was in a chair by the age of 12 and is now a quadriplegic, and my mother is still ambulatory. They're both around 60.

Two years ago I was working as a carpenter, then one year ago I developed weakness about my legs, hips and shoulders, so I'm undergoing testing and awaiting a diagnosis. My physician thinks that I have SMA. My DNA test was not informative, my EMG showed a reduced motor unit recruitment, and my first muscle biopsy showed non-specific changes. My physician tells me that these findings are suggestive of SMA, and due to the slowly progressive nature I would need a second biopsy from a more affected muscle if I wanted a definitive answer, which I do. I'm 25 so I would have type 3b, maybe adult onset type 4.

I have searched the net for people with SMA but there aren't many support forums out there. Its good to meet someone who's going through the same condition as my family.

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