Hjlee
Member
- Joined
- Aug 4, 2017
- Messages
- 21
- Reason
- Loved one DX
- Diagnosis
- 08/2017
- Country
- US
- State
- CA
- City
- San jose
Hi,
my mom recently (8/2/2017) diagnosed as ALS by neurologist in Santa Clara Valley Medical Center (Jeffrey Fraser, MD)
She had a first symptom of weakness on her left ankle and few times of loosing balance on April 2016. Before the symptom, she fell down from the chair while she was wiping the window and sprain her ankle. She went to the acupuncture place for treat. So she thought it was because of that accident. But then later, she felt weakness on left leg.
She went to her primary doctor for the condition and got referrer for the lumbar spine MRI, EMG test (legs), and neurosurgeon . The result was "the lumber vertebra and normal in height. No fracture or lytie lesion is evident. The paraspinal muscles and soft tissues appear normal". For the Emg test, there was no peroneal nerve response in left lower extremity, however left superficial peroneal nerve was intact. EMG study of L4 innervated muscles in left lower extremity showed fibrillations and sharp waves, which were not seen in the right lower extremity. Left tibial nerve response was intact. But, after seeing result summary and the picture of lumbar, the neurosurgeon recommended surgical decompression due to given significant deficit L LE motor. (doctor said some part of bone? might pressing the nerve) We refused to have a back surgery. Then he referred my mom to neurophysiologist. After seeing my mom's condition, the neurophysiologist said it can be due to my mom's diabetes (she was pre-diabetes). I have Diabetes type1 and my condition was worse before i found out that i have Diabetes. I never had similar symptom as my mom. So we thought he wouldnt give us any help so we decided to find another ways to help my mom. We went to chiropractor, rehabitation and etc. Finally, we decided to restart everything. (it all happened during August 2016- Feb 2017)
She was still able to walk (little bit limping but normally until early January 2016. From January, she gradually started to lose her muscle on left leg's thigh ( she was still able to walk with cane. Around mid January, she had foot drop on left leg and started to use AFO).
We started to see neurologist (Jeffery Fraser, MD) at Santa Clara Valley Medical Center. He ordered another EMG test on left leg, right leg, jaw, arms and pelvis(?). Also he ordered brain and spine MRI. Both Brain and Spine MRI looked clean. They found abnormal on both legs, both arms, and mid part of spine. Luckly(?), her jaw part was normal. She have done few blood tests. tyroids, blood cell counts, and ect. Everything was normal. after few visits with Dr. Jeffery, he finally diagnosed my mom as ALS.
We are going to find a way to hear second opinion from neuromuscular doctor at Standford or UCSF.
For now, her muscle twitching on both amrs are gone but still have a little muscle twitching on her left leg (very often). She feel that her right leg is also getting tired but not like left leg. Only infected (?) part is her left leg. She can still move her toe downwards but not up. She is still able to walk with walker. there is no problem with moving her hands or arms and no problem of breathing and eating. It is been an year since first symptom.
My question is that everyone has different speed of progression. After reading my explanation about mom, how fast is her condition progressing? can we still hope that she might receive different diagnosis?
Thank you
my mom recently (8/2/2017) diagnosed as ALS by neurologist in Santa Clara Valley Medical Center (Jeffrey Fraser, MD)
She had a first symptom of weakness on her left ankle and few times of loosing balance on April 2016. Before the symptom, she fell down from the chair while she was wiping the window and sprain her ankle. She went to the acupuncture place for treat. So she thought it was because of that accident. But then later, she felt weakness on left leg.
She went to her primary doctor for the condition and got referrer for the lumbar spine MRI, EMG test (legs), and neurosurgeon . The result was "the lumber vertebra and normal in height. No fracture or lytie lesion is evident. The paraspinal muscles and soft tissues appear normal". For the Emg test, there was no peroneal nerve response in left lower extremity, however left superficial peroneal nerve was intact. EMG study of L4 innervated muscles in left lower extremity showed fibrillations and sharp waves, which were not seen in the right lower extremity. Left tibial nerve response was intact. But, after seeing result summary and the picture of lumbar, the neurosurgeon recommended surgical decompression due to given significant deficit L LE motor. (doctor said some part of bone? might pressing the nerve) We refused to have a back surgery. Then he referred my mom to neurophysiologist. After seeing my mom's condition, the neurophysiologist said it can be due to my mom's diabetes (she was pre-diabetes). I have Diabetes type1 and my condition was worse before i found out that i have Diabetes. I never had similar symptom as my mom. So we thought he wouldnt give us any help so we decided to find another ways to help my mom. We went to chiropractor, rehabitation and etc. Finally, we decided to restart everything. (it all happened during August 2016- Feb 2017)
She was still able to walk (little bit limping but normally until early January 2016. From January, she gradually started to lose her muscle on left leg's thigh ( she was still able to walk with cane. Around mid January, she had foot drop on left leg and started to use AFO).
We started to see neurologist (Jeffery Fraser, MD) at Santa Clara Valley Medical Center. He ordered another EMG test on left leg, right leg, jaw, arms and pelvis(?). Also he ordered brain and spine MRI. Both Brain and Spine MRI looked clean. They found abnormal on both legs, both arms, and mid part of spine. Luckly(?), her jaw part was normal. She have done few blood tests. tyroids, blood cell counts, and ect. Everything was normal. after few visits with Dr. Jeffery, he finally diagnosed my mom as ALS.
We are going to find a way to hear second opinion from neuromuscular doctor at Standford or UCSF.
For now, her muscle twitching on both amrs are gone but still have a little muscle twitching on her left leg (very often). She feel that her right leg is also getting tired but not like left leg. Only infected (?) part is her left leg. She can still move her toe downwards but not up. She is still able to walk with walker. there is no problem with moving her hands or arms and no problem of breathing and eating. It is been an year since first symptom.
My question is that everyone has different speed of progression. After reading my explanation about mom, how fast is her condition progressing? can we still hope that she might receive different diagnosis?
Thank you