Valya
Distinguished member
- Joined
- Sep 28, 2008
- Messages
- 127
- Reason
- Other
- Country
- US
- State
- TX
- City
- Austin
Hello everyone. This is my first posting and first, I’d like to say special thanks to Al for taking care of the activation which I somehow managed to goof up.
I’ve tried to post this I don’t know how many times, only to exit out. Putting this all into words and ‘out there’ makes it a bit too real and more difficult that I had anticipated for some reason.
Our oldest son Johnny is 18. When he was 14, he discovered the guitar and played incessantly, voraciously learning new chords/scales/improvisations, always going for the fastest, most complicated finger patterns. He blew though two instructors and was last studying with an excellent classical style teacher. About February, we noticed he was having trouble with some of the fingering. He’s a perfectionist, and stressed so much over not playing the way he wanted, he stopped playing, saying after 4 years, he needed a break. He had no pain, no discomfort, nothing seemed unusual and we were not concerned, thinking he would return to music when he was ready.
In July my husband and our son flew our airplane, landed and were taxiing to the hanger. Once there, my husband asked my son to turn off the ignition. Johnny attempted to turn the key with his left hand but was unable to, saying his grip wasn’t strong enough.
Well…two and half months later, two doctors, a skeletal x-ray, an EMG/MRI and we’re sitting in doctor #2 exam room, expecting to hear Johnny has carpel tunnel from excessive guitar playing. We were shocked when the doc tells us he believes our son has either MMN or ALS and he’s referring Johnny to UC Davis in Sacramento for confirmation of his diagnosis. He claims to have been incorrect with this diagnosis only once before. We now have a consultation meeting scheduled with Dr. David P. Richman at UC Davis on November 4. (Another month lost!)
After reading information on this site and credible online sites, I realize there weren’t nearly enough tests for us to be told that our son had MMN/ALS or any other illness. I’m still furious about his unprofessional handing of this which has caused untold, incalculable stress upon our entire family, but especially my son.
Here is a portion of the doc report which I had to type since my PDF won’t copy/paste so pls excuse any errors…
“……complaint of several months’ history of weakness and atrophy of the left hand. Upon close exam, I noticed he actually had atrophy of both hands, but more pronounced on the left side. His hands, especially his left, appear misshapen due to the muscle atrophy. He has normal sensations throughout. He has significant weakness of both hands, more on the left than the right. He had hyperreflexia throughout all four extremities. I also noticed some fasciculation in the upper left extremity.
“Electromyogram of the upper extremities on both sides and the right lower extremity and the tongue muscles showed 2-3+ positive sharp waves and the fibrillation potentials in the left deltoids, biceps brachii, extensor carpi radialis, pronoator teres and the first dorsal interossei, as well as fasciculation in all those muscles. Also, in all those muscles, there was significant reduced recruitment. In the right upper extremity, there was 1-2+ positive sharp waves and fibrillation potentials in the right deltoid, biceps brachii, extensor carpi radialis, pronator teres and the first dorsal interossei. In the right upper extremity as well, there were significant fasciculation noted. In the right lower extremity there was a lesser degree of fibrillation potentials but 1+ fibrillation potentials were present in the right anterior tibialis and the right vastus medialis. There were also some fasciculation noted in the right lower extremity, but to a lesser extent."
"In light of his clinical picture, normal sensation, hyperreflexia, weakness and atrophy in both upper extremities, negative MRI, this electromyogram finding is quite suspicious for possible motor neuron disease.”
NOTE: He verbally gave us a diagnosis of MMN or ALS but didn’t mention that in his report…is that the normal procedure? Why would he tell us that and NOT include that information?
I’m scared, can’t eat or sleep and angry on so many different levels. I’m doing massive research, trying to weed out misinformation so we can be proactive not merely reactive, especially at the consultation at UC Davis. In this endeavor, I’ve deeply appreciated this site. The abundance of practical information here is invaluable. The concern and support of so many individuals who are bound together, yet will most likely never meet in person, is over whelming.
I would appreciate any feedback, as we truly at a loss of how to deal with this. There is more I could say but I only have so much Kleenex and you get the general picture.
If you’ve read to this point, thanks for your time. Sorry if this is too long.
Valya
I’ve tried to post this I don’t know how many times, only to exit out. Putting this all into words and ‘out there’ makes it a bit too real and more difficult that I had anticipated for some reason.
Our oldest son Johnny is 18. When he was 14, he discovered the guitar and played incessantly, voraciously learning new chords/scales/improvisations, always going for the fastest, most complicated finger patterns. He blew though two instructors and was last studying with an excellent classical style teacher. About February, we noticed he was having trouble with some of the fingering. He’s a perfectionist, and stressed so much over not playing the way he wanted, he stopped playing, saying after 4 years, he needed a break. He had no pain, no discomfort, nothing seemed unusual and we were not concerned, thinking he would return to music when he was ready.
In July my husband and our son flew our airplane, landed and were taxiing to the hanger. Once there, my husband asked my son to turn off the ignition. Johnny attempted to turn the key with his left hand but was unable to, saying his grip wasn’t strong enough.
Well…two and half months later, two doctors, a skeletal x-ray, an EMG/MRI and we’re sitting in doctor #2 exam room, expecting to hear Johnny has carpel tunnel from excessive guitar playing. We were shocked when the doc tells us he believes our son has either MMN or ALS and he’s referring Johnny to UC Davis in Sacramento for confirmation of his diagnosis. He claims to have been incorrect with this diagnosis only once before. We now have a consultation meeting scheduled with Dr. David P. Richman at UC Davis on November 4. (Another month lost!)
After reading information on this site and credible online sites, I realize there weren’t nearly enough tests for us to be told that our son had MMN/ALS or any other illness. I’m still furious about his unprofessional handing of this which has caused untold, incalculable stress upon our entire family, but especially my son.
Here is a portion of the doc report which I had to type since my PDF won’t copy/paste so pls excuse any errors…
“……complaint of several months’ history of weakness and atrophy of the left hand. Upon close exam, I noticed he actually had atrophy of both hands, but more pronounced on the left side. His hands, especially his left, appear misshapen due to the muscle atrophy. He has normal sensations throughout. He has significant weakness of both hands, more on the left than the right. He had hyperreflexia throughout all four extremities. I also noticed some fasciculation in the upper left extremity.
“Electromyogram of the upper extremities on both sides and the right lower extremity and the tongue muscles showed 2-3+ positive sharp waves and the fibrillation potentials in the left deltoids, biceps brachii, extensor carpi radialis, pronoator teres and the first dorsal interossei, as well as fasciculation in all those muscles. Also, in all those muscles, there was significant reduced recruitment. In the right upper extremity, there was 1-2+ positive sharp waves and fibrillation potentials in the right deltoid, biceps brachii, extensor carpi radialis, pronator teres and the first dorsal interossei. In the right upper extremity as well, there were significant fasciculation noted. In the right lower extremity there was a lesser degree of fibrillation potentials but 1+ fibrillation potentials were present in the right anterior tibialis and the right vastus medialis. There were also some fasciculation noted in the right lower extremity, but to a lesser extent."
"In light of his clinical picture, normal sensation, hyperreflexia, weakness and atrophy in both upper extremities, negative MRI, this electromyogram finding is quite suspicious for possible motor neuron disease.”
NOTE: He verbally gave us a diagnosis of MMN or ALS but didn’t mention that in his report…is that the normal procedure? Why would he tell us that and NOT include that information?
I’m scared, can’t eat or sleep and angry on so many different levels. I’m doing massive research, trying to weed out misinformation so we can be proactive not merely reactive, especially at the consultation at UC Davis. In this endeavor, I’ve deeply appreciated this site. The abundance of practical information here is invaluable. The concern and support of so many individuals who are bound together, yet will most likely never meet in person, is over whelming.
I would appreciate any feedback, as we truly at a loss of how to deal with this. There is more I could say but I only have so much Kleenex and you get the general picture.
If you’ve read to this point, thanks for your time. Sorry if this is too long.
Valya
