Status
Not open for further replies.

Kewanee

Active member
Joined
Jul 6, 2007
Messages
35
Reason
CALS
Country
US
State
New England
City
Skowhegan
My mom is 84 years old and is now living with us. Hard for her to give up her home and she does not let us forget that.

We noticed her speech slurred sometimes and so made an appt. to see if she had a stroke.

That resulted in another referral, a Neurologist.
This neuro. keeps the lowest profile I've ever seen. Does not do his own EMG and has no equip. Little office and it looks like very little overhead. But they say he's smart.

So he does an MRI and it's clean.

Meanwhile we have also been complaining of moms coughing and choking when she eats and drinks mostly. There are other times but meal times can get awful.

Good to mention here I guess that her sister died of ALS in her 40's.

So the Doc. examines mom and spends time just looking at her arms. Now I am looking too. Her muscles in the backs of her arms and the forearms are quivering, steadily.

He wants an EMG. Now mom being 84, that seems like alot to ask.
He is right out with I think she has a serious muscle disease.

Well we say we'll think about it. He has even called about it.

Next visit it comes up and he brings my attention to moms arms again and yes they do quiver in those certain muscle area's still.

She does not trip when walking and I don't see real muscle weakness. Her thumbs don't seem to work well however and she complains of pain in her arm and one leg.

Still considering an EMG. If it is ALS they can't do anything about it so ...should she be subjected to this?

We are making some headway so far with her swallowing by tilting the head when swallowing and taking small bites. Certain foods are out.

Could this really be ALS? She is worried and already suffers depression. I'm scared for her and don't want her to be put through alot of painful things.

I'm worried for me too as I get alot of spasms in legs and arms and rib area. But have for a long time. Only recently my foot wants to slowly turn under and the cramping is painful. Mom does not get this. I get parathesia's and reflexes that go away. Mom's are ok.
My walking any distance is difficult and I drag my feet, mom walks like Tim Conway imitating an old person.

Worried here and have so many questions running around in my head.

Kewanee
 

hboyajian

Distinguished member
Joined
Oct 31, 2006
Messages
267
Reason
Lost a loved one
Country
US
State
Washington
City
Vashon
Hi, I'm so sorry you and your mom are going through this uncertainty and concern while you consider the possibility of an ALS diagnosis. My father was also 84 when diagnosed with ALS, though he had very severe symptoms by then. There are many tests that would need to be done to rule out other possible illnesses and to rule in the greater certainty of ALS. My dad had the EMG, and he did not consider it so terrible. Different people react differently to various procedures. I do think it is important to have it done so that you can access support, equipment for daily living and doctors who are experts in ALS and can help your mom get what she needs (if indeed this is what she has). Also, the EMG would help determine if it is not ALS and she wouldn't have to go through the worry and fear about it anymore. I think it is time to go to an ALS clinic where the doctors are specialized in diagnosing and providing treatment. If your mom is fearful about the EMG, encourage her to let the doctor know so she can be given medication to help her stay calm and prevent distress. If indeed your mom is not suffering from ALS, the various diagnostic procedures may indicate another illness which might be treatable. It is important to know this so the appropriate actions can be taken. Best wishes, Holly
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
Kewanee, welcome to the forum. I'm sorry your mom is having these problems. I know it's a hard choice for you to make about the tests considering your mom's age. There may also be issues with cost, insurance coverage or not?

The problem with diagnosing ALS is there are so many tests usually done to rule out MS, Parkinsons, etc. that you need to decide if the ordeal is worth putting your mom through all that to learn if she has ALS, and then know there is no treatment.

My heart goes out to you as you face these decisions. I pray that whatever you decide along with your mom that you and she will have peace.

God Bless
Capt AL
 

Kewanee

Active member
Joined
Jul 6, 2007
Messages
35
Reason
CALS
Country
US
State
New England
City
Skowhegan
I so appreciate your posts. I wonder why they don't just do a muscle biopsy? Can't they cut back on these invasive tests?

Yes insurance is the thing. Without a diagnosis that is firm I was told they may refuse certain treatments.

Things are starting to look more like ALS symptoms with my mom. Breaking my heart.

She seems to have something in her throat or below she cannot raise now. Foods are becoming needfully selective. The quivering won't stop in her arms.

I think I'm going to try to get her to do at least the EMG and the biopsy instead if it would do it. No spinal taps. Just not needed.

Thank you so much.
Kewanee
 

midwestgirl

Distinguished member
Joined
Feb 13, 2007
Messages
101
Reason
Loved one DX
Country
US
State
IN
City
Indianapolis
Hi Kewanee
I am so sorry to hear of your mom's possible ALS diagnosed. My mother was diagnosed Dec 2006, but had symptoms for at least one and half years before. Mom did have the EMG in Dec, which gave us the diagnosed of ALS - the test was not fun, but she said not that bad, either. I would recommend getting an EMG, and see what the results are. From what I have heard, the muscle biopsy can be rather painful.

As far as the choking and mealtime issues, I can definitely relate as mom started with foot drop, but now has bulbar problems. She did have a feeding tube placed April 2 of this year, as she was having a lot of choking when eating, and we were worried about aspiration. Make sure you have your mom tuck her chin down when eating or drinking. Also, you can get something called "thicket" to thicken her liquids - this will make it easier to swallow. In the beginning, mom would drink a lot of chocolate milk and tomatoe juice, as they are naturally a little thicker.

ALS is so different in each person - your mom may be having more arm involvement, and bulbar symptoms.

Good luck and best wishes!
 

Kewanee

Active member
Joined
Jul 6, 2007
Messages
35
Reason
CALS
Country
US
State
New England
City
Skowhegan
midwestgirl said:
Hi Kewanee
I am so sorry to hear of your mom's possible ALS diagnosed. My mother was diagnosed Dec 2006, but had symptoms for at least one and half years before. Mom did have the EMG in Dec, which gave us the diagnosed of ALS - the test was not fun, but she said not that bad, either. I would recommend getting an EMG, and see what the results are. From what I have heard, the muscle biopsy can be rather painful.

As far as the choking and mealtime issues, I can definitely relate as mom started with foot drop, but now has bulbar problems. She did have a feeding tube placed April 2 of this year, as she was having a lot of choking when eating, and we were worried about aspiration. Make sure you have your mom tuck her chin down when eating or drinking. Also, you can get something called "thicket" to thicken her liquids - this will make it easier to swallow. In the beginning, mom would drink a lot of chocolate milk and tomatoe juice, as they are naturally a little thicker.

ALS is so different in each person - your mom may be having more arm involvement, and bulbar symptoms.

Good luck and best wishes!

Thank you for that tip on the fluids and I'm so sorry you are also suffering this with your mom. From what I hear and have read, mom has started with Bulbar problems.
I suppose we will worry about our moms and then worry about ourselves and the possibilities.
I am going to see a movement specialist next tues. about five hours away because I have muscle and nerve problems. Mine have gone on for a few years however and don't seem to be the same as mums. I started with leg and foot which have progressed to hands and now the midriff and abdomen with spasms and involuntary movement. I'm so hoping it's not ALS and I need to care for my mom. Yes think I'll really try to get mom to do the EMG.
I don't think you can take anything to calm you with this test.
Best Wishes to you and your mom.
Kewanee
 
Status
Not open for further replies.
Top