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Hjlee

Member
Joined
Aug 4, 2017
Messages
21
Reason
Loved one DX
Diagnosis
08/2017
Country
US
State
CA
City
San jose
Hi everyone, hope you guys had great long weekend :)

My mom diagnosed as ALS on 8/2/17 and its been a month now. Her symptom started on left leg and now her right leg seems becoming just like her left leg.

Recently, my mom told me that she started to have back muscle twitching and worries about this. Is this back muscle is common symptom of ALS?

I wanted to ask our neurology but she got denied by seeing a doctor because her restrict medical says its not covered. and now we are trying to find out the way to see neurology.
 
Hjlee,

Assuming a confirmed diagnosis of ALS, from your brief description, it sounds like the twitching in your mom's back is caused by muscle fasiculations. This is a common symptom in ALS, even in muscles that are not yet noticeably weak.
However, I'd want to know more about how your mom's diagnosis was confirmed. Did she see a neuromuscular specialist and have EMGs? Specifically what types of symptoms did she have in her legs?
So sorry you and your mom have to go through this, but welcome.
 
Hi Karen,
first of all, thank you for your response.
We got first diagnosis as ALS from neurology and will have 2nd opinion at Stanford ALS clinic on 9/26/2017.
She had weakness on left ankle (that's what she thought) and then left leg foot drop. Meanwhile, she gradually lost most of muscles on her left thigh. Her right leg was normal until few months ago, but becoming just like left leg. She could move right toes up and down but now its kinda hard to move up. She cannot move left toes up at all but she can move down her left toes.
She has done EMG tests and came out both upper and lower ares damaged. That is why both EMG doctor and neurology diagnosed as ALS.
She still able to walk a little bit with walker. When she walks a lot, she feels heavy on her back. When she stretches her back, she feels more comfortable walking.
The doctor said her progression is average slow.
 
OK. Sounds like ALS, but second opinion will be helpful to confirm whether or not this is the case. An opinion from a University medical center (such as Stanford) is a great idea.
So it sounds like she is having fasciculations in her back muscles. If she has ALS, this is a common symptom, and over time she will probably learn to ignore it.
As you will read elsewhere in this forum, fasciculations can also be seen in a number of other non-ALS conditions, including benign fasciculation syndrome, so the opinion from Stanford should help sort out whether she has ALS vs something else.
Best of luck to you and your mom.
 
Thank you Karen,
just wondering, have you heard about CBD (cannabidiol) oil treatment for ALS patient?
I was trying to find some posts regarding this here but only 3 posts that i could found and those are not recent post.
Since there is no other treatment that my mom can get, this might be the one what we can try.

Thank you
 
I'm going to defer to others regarding potential benefits of cannabidiol oil and ALS. Maybe it should be a new thread. I'm also curious about whether this is helpful.
 
There are several CBD threads. Search on the abbreviation.
 
Hi igelb,
I have been searched CBD on search, but only i could get were 4posts that were posted few years ago. Is there recent post regard CBD?

Thank you
 
I see 7 "pages" of results. If you want to see them by date, click sort by date and the most recent will show first.
 
My mother was diagnosed with ALS on 8/16/17. She had seen a neurologist 7/2017 that suspected ALS and suggested that we get a second opinion. We went to an ALS Center of Excellence. Our experience was amazing. We saw a neurologist, pulmonologist, psychologist, respiratory therapist, occupational therapist, physical therapist, speech therapist, dietitian, social worker, ALS RN Clinic Coordinator, had another EMG, and a fitting for powered wheelchair. All of this was done in a three day outpatient visit.

I sent all previous medical records including lab and imaging reports, medication lists, past medical and surgical history, and the new pt information packet to the center before our visit. I am glad that I took a copy of all the above with me because they asked me for copies of parts of it again. (Asked for the medication list multiple times). They needed to have the imaging reports and wanted to look at the disk. They needed a copy of her immunization record. I was also asked for the name, address, contact information from all of her physicians, as well as her pharmacy info.

We took wheelchair because she can not walk long distances but we should have taken her walker as well. They needed to see how she walked and she needed walker to get to restroom. We also took all the things she needed for comfort (sweater, heating pad, snacks, book to read, ipad).

Everyone that saw her gave us their business card. Those have been an amazing resource to have since we have been home. I have had to contact a few of them for more information or to get a question answered.

I am glad that other family members were there to help us remember the massive amount of information that was shared with us. You might want to start writing down a list of questions to take with you to the appointment.

Best of luck to you and your mom !
 
Alab,
Thank you so much for sharing your story. And yes, i ve searched some posts for what to prepare when we go for 2nd visit. I have all copied documented and already divided into some sections such as emg, physician's note, mri, blood tests, and etc. for now, we are just hoping for different diagnoses from 2nd opinion.
 
I hope you get a different diagnosis too!
 
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