UNGERMEL's THREAD

[ungermel]

Hi, I am worried that my mom may have ALS - 2 years ago my mom, chopped her own wood, drove, hiked up mountains, walked 3 -5 miles everyday.. very active. Here symptoms that I have seen in the last two years:
First - hand tingling - waking her up at night - now muscle atrophy so bad her hands look like a mummy's hands. She can hold a cup with a handle - but it takes her for ever to lift it - and then forever to release it.
She can walk - but gets very tired... sometimes she can not get her feet to move - like they forgot what to do.
She has a hard time getting up - she has to have something there to help her pull herself up... she uses a walk but is relying on a wheel chair more and more
She has a difficult time swallowing - she choke on food the other day... and they had to do they hymlic on her!!! She is now on pureed food only (and hates it!)
She is getting very stiff in the back and neck... She drools a lot... her speech is not really slurred - but is different and at times to low to hear... I guess I could go on. She is in assisted care and has been for 6 months. The one symptom that does not seem to match - she has gradually lost control of her bladder... she wears diapers all the time now...

So... any opinions?

 

[KimT]

How old is your mom? Did they do a brain MRI to rule out MS? First symptom "tingling" not consistent with ALS. Has she been seen by a neurologist?

 

[Atsugi]

Ungermel, age is important as Kim says. And the MRI.
It doesn't sound like ALS to me. The major complaint seems to be all over weakness, especially both legs. And I got the impression that some days are better than others, yes?
I wonder if she's adequately hydrated. Old people often forget to drink water.

 

[ungermel]

She does seem to get enough fluids, she likes juice, chocolate milk and coffee. Yes it has progressed to most of her limbs - this started slowly about 2 years ago... her dominate hand first... then the other hand.... now her legs. We moved her to assisted living in August 2015...

 

[Atsugi]

Doesn't sound good. But not necessarily ALS. Only her doctors can test for that.

 

[ungermel]

That is true... unfortunately after going to the Dr 4 times and them not say anything except "you are getting older" she has decided they are all quacks! The bad part is she had been so healthy she had not been to a Dr in over ten years - so they have no base line!!! It just seems like she has gone form 60 mph to zero in 3.4 seconds! Thank you for your time...

 

[ungermel]

My mom is 76. She has had MRI and ultra sound on her hands and arms when they were loosing function... She has had blood tests and e-rays... all tests seem to come up empty

 

[KimT]

It would be good if she were seen by a neurologist. There are many other disorders that are treatable. It would be a shame to let her go downhill if she has something that can be treated and give her back her life. Please consider.

 

[Atsugi]

You could ask her primary care physician to examine her. If the Dr thinks it is appropriate, he'll refer her to the appropriate specialist.

What is the expected life span of her family? This might be the way her family goes. In fact, it's important to understand that, in ALS, there is no cure. The way you treat ALS patients is to simply give them comfort care. you treat each symptom as new ones come around, to relieve discomfort, pain and fear.

If she is, indeed, near the end of her natural life, then it's perfectly reasonable to just treat each symptom as it occurs. However, it is always best to get a diagnosis.

 

[ungermel]

Natural life span = my grandma is still alive - her mom. Her dad died a few years (3) back of cancer. I have a great aunt that is still alive - so no this is not normal for her family. Maybe I am grasping at straws... I am a chemistry teacher and my mom helped with labs every week for years - messing with kids.. that stopped last year with the onset of these symptoms - again 60 - 0 in 3.5 seconds! I just feel so frustrated that such an active woman ... stops! Stops writing, walking, moving! Even kids ask... is your mom going to help with the yes fair... very sad..

 

[lgelb]

Urinary incontinence can occur with ALS and many other neurologic illnesses. Or could reflect something non-neurologic.

I agree with Kim, there's no reason without, say, an EMG (has she had one?) and a complete neuromuscular evaluation to count her out.

"Family lifespan" is irrelevant.

Best,
Laurie