InTheVoid
Member
- Joined
- Jan 24, 2012
- Messages
- 12
- Reason
- Learn about ALS
- Country
- CA
- State
- Saskatchewan
- City
- Regina
Hi!
So good news but frustrating to no end. My biopsy results did not confirm an SMA diagnosis, however there were "mild non-specific changes of skeletal muscle". I'm so sick of the term "non-specific"! My EMG showed non-specific recruitment abnormalities, and now my biopsy was non-specific but did show changes in the muscle? My biopsy showed no signs of atrophy, and muscle fibers were in the usual checkerboard pattern as apposed to fiber grouping normally found with SMA. I wonder if it was too soon to find any significant changes with a biopsy given that I only had symptoms for a short time? Am I wrong to say that there must be something to find based on these abnormalities? Am I grasping at straws? I don't want to have SMA but I need answers and so far the only think I've heard is "We cannot confirm a diagnosis at this time." , "It is unlikely for you to have or be pre-dispoded to develop SMA", All I want to hear from a doctor is "You definitely do not, and will not develop SMA". I have an intake appointment with a physio therapist this week so hopefully I will start to gain some strength and stamina so I can return to work.
Kitchner, as you said many people may feel better being uncertain about a bad outcome than certain about it, however I pride myself on being factual, backing up claims with evidence, and being certain and understanding the way things are. I need to know, when I look at a house I decipher how it is constructed, how the joists and posts are carrying loads to the foundation, what brings structural integrity to the building and how a wall can be removed without the ceiling sagging or collapsing. I guess its in my nature to find answers and solutions. My mother started having health issues in her teens/early twenties but it wasn't until she was 44 years old and four children later that she had a diagnosis of SMA. I couldn't imagine 20+ years of not knowing.
So good news but frustrating to no end. My biopsy results did not confirm an SMA diagnosis, however there were "mild non-specific changes of skeletal muscle". I'm so sick of the term "non-specific"! My EMG showed non-specific recruitment abnormalities, and now my biopsy was non-specific but did show changes in the muscle? My biopsy showed no signs of atrophy, and muscle fibers were in the usual checkerboard pattern as apposed to fiber grouping normally found with SMA. I wonder if it was too soon to find any significant changes with a biopsy given that I only had symptoms for a short time? Am I wrong to say that there must be something to find based on these abnormalities? Am I grasping at straws? I don't want to have SMA but I need answers and so far the only think I've heard is "We cannot confirm a diagnosis at this time." , "It is unlikely for you to have or be pre-dispoded to develop SMA", All I want to hear from a doctor is "You definitely do not, and will not develop SMA". I have an intake appointment with a physio therapist this week so hopefully I will start to gain some strength and stamina so I can return to work.
Kitchner, as you said many people may feel better being uncertain about a bad outcome than certain about it, however I pride myself on being factual, backing up claims with evidence, and being certain and understanding the way things are. I need to know, when I look at a house I decipher how it is constructed, how the joists and posts are carrying loads to the foundation, what brings structural integrity to the building and how a wall can be removed without the ceiling sagging or collapsing. I guess its in my nature to find answers and solutions. My mother started having health issues in her teens/early twenties but it wasn't until she was 44 years old and four children later that she had a diagnosis of SMA. I couldn't imagine 20+ years of not knowing.
