Status
Not open for further replies.

ebaumgar

New member
Joined
Dec 11, 2016
Messages
3
Reason
Other
Country
US
State
CO
City
lafayette
Hi,
My mom has some new muscle weakness. First symptom I remember was 2.5 years ago when we were hiking she though she needed a backpack if she was walking a while to help her posture as she felt the need to lean forward. She was able to work for almost 2 years after that as a busy nurse. Then she retired. She's 62. No hx of back injury or back pain.

It got worse. She did 6 months of physical therapy recently. It didn't improve at all. And now she's weaker than when she started therapy. She used to be able to go from sitting to standing without using her hands for support and now she has to use her hands to push herself up. She feels it's hard to stand up straight and has to think about walking around vs it used to be automatic. She feels heavy walking around. She mentioned she uses a shopping cart often when shopping just for extra support to walk around.

Her PCP ordered a spinal MRI, it showed moderate paraspinal muscular atrophy. His nurse called her back, said to make a neurology appointment and see an orthopedic MD. Not sure what an orthopedic MD would do with no back injury or pain.
Now we are awaiting the neurology appointment- likely in March.
Does this sound at all like als? Her first symptom of weakness 2.5 years ago, is that too slow of a progression? Have you heard of it starting in paraspinal muscles? Any advice would be great. She will be scheduled at a university hospital but it’s not listed as an ALS center. Do you think I should try to get her on the list at the closest ALS center or should wait to see what this neurologist says in March?

Thanks in advance.
Beth
 
That is not typical ALS onset, but she does need to find out what is going on for sure. The amount of time this has been going on is certainly in her favour too.

She could ask to be put on the cancellation list so that she may get in faster than March.

I think she should follow the advice of her PCP and keep an open mind, letting the doctors guide her as to what might be happening and what specialties/tests are appropriate. I hope that helps.
 
I think she's over 60 and retired. I'm over 60 and doubly retired (I do not have ALS) and I think my muscles are gonna kill me. I have all the symptoms you described. Retiring was the worst thing to ever happen to my body.

That's just one possibility, of course. There's no ALS, there. I've lived with ALS, studied it, and listened to people with ALS daily for several years. Drop it off your list of possibilities.
 
Thanks for your reply. One thing I didn't mention was she was actually working out for a the first time and trying to get into better shape since retirement. So she has not been just sitting around. But, her weakness didn't improve at all. Not with physical therapy and not with starting classes at the local gym. It got worse. the increased weakness going from being able to go from sitting to standing without using her hands to having to use her hands to push herself up - a change over 6 months seems like a concerning change to me. She's not a complaining type of a person and I can tell she's worried. She keeps saying this is not normal aging. But I realize there are a lot of differential diagnoses possible. I am curious if anyone has any ideas on any type of NMD that typically/or can starts with paraspinal muscle atrophy- which her MRI showed she has a moderate amount.

Take care & thanks again


Thanks!
 
We know ALS really well, but we're not doctors, so we couldn't responsibly venture any guesses about other possibilities.

When we say ALS causes weakness, we're talking about a muscle that doesn't get the 'go' signal from the brain, so it is profoundly weak--limp. ALS is about paralysis.

Most cases of ALS start in a hand--you can't button a shirt or turn a key in a lock. Often it starts in a foot--you trip or you can't point your toes upward. A small number of cases start in the neck/throat--you can't control the swallowing of thin liquids like water. Your mom, though, doesn't sound like ALS to me.

If ALS had started working on her 2.5 years ago, the odds are she would be dead by now, or at least seriously disabled.
 
I agree that someone who is in her early 60s and exercising/ having PT should not be losing the ability to stand

I have never seen anyone with ALS report such findings on an MRI. I think her answer will be something else and agree trying for a cancellation is a good idea. She can befriend the appointment person and possibly find out the best time to call to check. My experience has been that there is no list and you just have to keep calling. If she is willing and ready to go at the last minute there is a good chance something will open up.

Let us know when she gets an answer
 
thank you I appreciate all your ideas and thoughts. Will try to get her on the cancellation list & keep calling if needed. Take care!
 
Status
Not open for further replies.
Back
Top