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Misdiagnosed with ALS
At the time of my symptoms approximately 9 years ago the Pompe blood test was not in use from what I understand. Back then there was debate whether a muscle or skin biopsy was the way to diagnose, I had both but only the skin biopsy revealed it. Pompe is rare, I believe I'm only one of a dozen...- Words: 67
- SJB50
- Post #9
- Forum: Could this be ALS?
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Misdiagnosed with ALS
You may be right about the EMG observation, I do remember her zapping me in the legs immediately feeling fasciculations. To this day I don't know if that meant anything but now that you metion it I do remember that her demeanor got kind of glum afterward although she never came out at that time...- Words: 82
- SJB50
- Post #7
- Forum: Could this be ALS?
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Misdiagnosed with ALS
One of the MDs I saw at B&W was Dr. Amato- I highly recommend him. On a side note making tnose tapes for my kids was, in hindsight, awesome therapy. With the ALS diagnosis at the time it was the only way I could fight back against "it". Take my word for it the first tape will be tough but I...- Words: 220
- SJB50
- Post #4
- Forum: Could this be ALS?
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Misdiagnosed with ALS
I just wanted to share my story for what it’s worth; I’ll try to give you the abridged version because it took place over many years. I had many of the symptoms associated with ALS- muscle weakness with fasciculation’s, diaphragm weakness, etc. I underwent a battery of tests ordered by my...- SJB50
- Thread
- age als als symptoms back battery biopsy children cold dad denial diagnosed diagnosis diaphragm hip hope immediately meds muscle muscle biopsy muscle weakness neurologist reading second opinion story symptoms tests wanted weakness young
- Replies: 11
- Forum: Could this be ALS?