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Hjlee

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08/2017
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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
 

soonerwife

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Mar 16, 2016
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Sorry to hear about your mom's dx. You have found a great place for info and support.

Everyone's progression is different. There seems to be rapid progression and plateaus for most everyone.

Second opinions are always a good idea. We can always hope for a different dx.
 

swalker

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So sorry to have to welcome you here, but welcome nonetheless.

I definitely encourage getting a second opinion for this or any other significant diagnosis.

I can't really comment on what her progression might be like. My observation is that progression is quite variable. Therefore, I recommend getting the most out of every day, because you can't tell what will or will not progress tomorrow, next week, or next month.

Steve
 

NothingButLove

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Hello and welcome to the forum no one ever wants to join.

I agree with the other posts. From what I've seen on the forum, progression is variable.

You can definitely still hope it's something else. There are diseases that mimic the symptoms of ALS. I remember sitting in the doctors office reading about a disease the mimics ALS. I think it said it affects 1 in 3.4 million people. Even then I still had hope. You just keep hoping until all the cards are played out.

Definitely get a second opinion from somewhere that specifically deals with ALS.

That said, your story sounds too familiar. Sprained ankle, nerve decompression, dropped foot, falling, twitching in the legs... My wife's symptoms started with a dropped foot that we thought was caused by a sprained ankle she got walking off a curb.

I don't know how you're coping with this but I can tell you from my experience, the first three months were nuts. I couldn't think about anything but ALS. It gets better as the shock wears off.

This is a great forum and valuable resource. I'm hoping nothing but the best for you.

Rob
 

Hjlee

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Joined
Aug 4, 2017
Messages
21
Reason
Loved one DX
Diagnosis
08/2017
Country
US
State
CA
City
San jose
Thank you everyone. Our family cannot think about anything but ALS. Our stage is like 50:50. 50 for admitting that my mom is ALS, 50 for misdiagnosis. Does anyone had similar symptoms as my mom? The only part that has weakness is on her left leg for several months. Now her right leg is getting tired too but still can move her knees up and down. Even she has foot drop on her left foot, she can still move her toes (including big toe) downward. She can mover her toes upward but not big toe. No weight loss past 1 year of first symptom.
 
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Lkaibel

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You can hope for another Dx and do get that second opinion. That being said your Mom's story sounds familiar to me too. My husband husband began with drop foot we thought was caused by a leg injury. Turned out the drop foot likely caused him to have the fall that led to the leg injury. I hang on hard to that leg injury, very hard.

I hope the ultimate outcome is different for your mom. I am sorry this happened to you.
 

Hjlee

Member
Joined
Aug 4, 2017
Messages
21
Reason
Loved one DX
Diagnosis
08/2017
Country
US
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CA
City
San jose
Thank you. We are really panic right now( especailly me). my emotion changes like 1000 times everyday ever since my mom diagnosed as ALS. I keep reading posts that are in here and other sections too. Trying to find someone's post that says he/she has similar symptom that my mom has right now and keep wondering how they are doing and what condtion they have right now. I know it can be really rude to ask them but i cant think of anything but mom. Hope you guys understand me....im trying to act like normal and keep encouraging my mom. Im still hoping that miracle can happen to my mom and hoping that she can hear different diagnoses on 2nd opinion. Im really scary and frustrated.
 

Bestfriends14

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CALS
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05/2017
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AB
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Hello there,

I'm so sorry to hear about your mum's DX. My husband started out similarly to your mum, as well. His left leg is severely atrophied, and the disease has spread to his right leg and right forearm, although he has no symptoms that he notices in his right limbs. These were seen through clinical testing and an EMG.

Because of the severe weakness in his left leg, he cannot walk without a brace and needs a walking stick.

Please do get a second opinion. That's always important in matters like this.

Take good care.

J
.
 
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