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My Mum who is 75 was diagnosed as having ALS a week ago. Her initial diagnosis was CIDP but after her progression and a 2nd assessment (done through the TGH under Dr. V. Bril's office) she was told that there was no hope of a cure.

We were devastated. She visited the Sunnybrook hospital and they are going to re-run her EMG, NCV tests and MRI. Dr. Zimmerman there is trying to rule out any other issues and to determine exactly what variant of ALS this could be.

It has been an emotional roller coaster for us. My mum is bedridden and shows no upper signs of the disease other than she has no power in her lower torso.

How can we tell how this disease will progress. She was walking slowly in Sep 2007 and is now bed-ridden.

ashley
 

Al

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Hi Ashley. Olive, Myrna , Dr. Zinman and the rest at Sunnybrook are the best. I'm sure they'll explain that there really is no way to tell how the disease will progress. If Dr. Newell does the EMG NCV he is most willing to explain the tests as he is doing them. Good luck.
AL.
 

Barbie4

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Hello

Your Mom is in good hands. my thoughts are with you.

Barb
 

Al

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Sometimes we do stabilize or plateau for a while. Problem is, you don't know when or if it will happen and how long it will last. I'm really sorry we can't be more encouraging for you. That is the ugly nature of the disease.
AL.
 

Shawn

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i'm sorry about your mom, Ashley.
i agree with Al tho, the staff at Sunnybrooke are very willing to help and they genuinely care.
if you have not done so yet, join the ALS Society.
they have newsletters and monthly meetings on a variety of subjects.
they are supportive in many ways.
plus, they are able to help with their equipment loan program.
my heart goes out to you and yours!
 
Joined
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Thanks.

My mum did go through tests at the Sunybrook Clinic and Dr. Zinman confirmed the diagnosis of Dr. V. Brill...she has ALS.

ashley
 

Paty

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Hi Ashley

Hi Ashley:

I am sorry on your mother's ALS DX., be sure that you've come to the right place for support.

I call these forums "My little house on the prairie" remembering a T.V. show I liked a lot,
I lost my husband to A.L.S. last Dec. 30th after being diagnosed Oct. 17, 2005, by a Neurosurgeon who had been a teacher to my son at the MedicineFaculty here at our University; it may seem not believable, but with just a Magnetic Resonance which came
out okay and after an EMG; the last of this came out with suspicion of MND; our
dear Dr. and friend Ricardo Flores Escamilla gave us the DX; my daughter wanted another opinion and my son took my husband to a prestigious hospital in Hermosillo, Sonora, tests were made and all of them came out negative; to our dismay; a muscle biopsy was to be done, but my husband was positive sure that his was as our friend Dr.
Flores Escamilla was right and this was ALS and refused to go through that.

We lived here at home two yrs. and when he started having problems breathing my son
took him to the hospital and the following procedures were done: traqueostomy and PEG, we spent six month's there until finally he died last Dec. 30th.

I can only tell you to try to be as much as you can with your mother; you and your family
will never regret being there for her.

Hugs,


Paty
Cals to late husband Jorge
Dx. Oct. 17, 2005
Died. Dec. 30th, 2007
Baja California, Mexico
 

Icanmanz

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Hi Ashley! So sorry to hear the bad news (diagnosed). May He guide you and your sweet mom through this dark journey. Just be there for your mom, make her remaining days the best, and most comfortable ever. I will keep you guys in my prayers. God bless!

Irma
 
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Thanks for the post.

My Mum is still in hospital as we wait for a nursing home.

Her breathing is OK but her vital signs are weaker. Her voice is hoarse. She is now taking pureed diet to prevent her coughing, etc.

Not sure when she will need breathing aid or with feeding.

ashley
 

CindyM

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I am sorry things are progressing so quickly for your Mum, Ashley. Please keep us updated. My thoughts are with both of you. Cindy
 
Joined
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Update on Mum

Mum is at a nursing home now after 2 months in the hospital. Suctioning is often and choking is sometimes the case.
She is fighting.
Feeding tube is the plan for Wed.
ashley
 

Al

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Thanks for the update Ashley. Hope she starts to feel better.
AL.
 

laurel

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Mum is at a nursing home now after 2 months in the hospital. Suctioning is often and choking is sometimes the case.
She is fighting.
Feeding tube is the plan for Wed.
ashley

Hi Ashley,
I've often thought about you and how your mother is doing. She and your family are in my prayers. You were very kind to send me the Cellcept info. when you were in the midst of your own troubles. Take care Ashley as life must be very stressful for you these days. When I'm down feeding our horses, I have my little routine of saying prayers for all those I have connected with by reading their stories here and on the CIDP forum. And I always hope that the serenity that I get from my horses will be passed on to those who need my prayers.
Laurel
 
Joined
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Mum has had her feeding tube and is resting.

No respiratory tube is planned but if she has difficulty she will be made as comfortable as we can.

ashley
 
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