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barbiern3

New member
Joined
Nov 5, 2006
Messages
1
Reason
PALS
Country
US
State
WA
City
Kennewick
Hello: My Mother is 72 years old and has since May become progressively weaker, starting with foot drop that has progressed to the point of uselessness. Her other leg is starting to become weaker and she uses a walker. She has seen 4 different neuros and has had many tests sometimes several times. She even had a muscle and nerve biopsy. She remains undiagnosed. Her current neurologist at USC prescribed IVIG for her, 4 days in a row, 4 months in a row. I am an RN and I am administering these meds. Although she has not received the diagnosis of ALS she continues to fixate that this is what she has. Understandably her fear is great. She is afraid all the time. She wants to know what is going to happen next and it seems no one can tell her. We have a large family, one of my sisters is an MD, internal medicine. Everyone is stepping around this fear of my Mother's. I would like to help her either way. Can anyone relate to this and do any of you have suggestions? I appreciate anything I can get at this point. Thanks Barbiern3
 

JMH

Active member
Joined
Jun 11, 2006
Messages
42
Reason
Loved one DX
Country
CA
State
Manitoba
City
The Pas
The first neurologist we had my Dad to told him he had ALS (without doing an EMG or nerve tests). We took him to an ALS specialist who confirmed the diagnosis (after doing the tests). Dad had widespread fascilations - we could see these under his skin when they were pointed out to us. He also had significant weight loss and muscle weakness/loss. We first noticed that Dad's right leg was weak when he got tired and he shuffled when he walked. That was last fall. He got the diagnosis confirmed Aug. 2 of this year from an ALS specialist. The GP that he saw in between told us he had Parkinson's because of the shuffle in his walk and started him on meds. for that. Has your mom had an MRI? With dad they sent him for a CT scan and finally an MRI to rule out other diseases. The specialist also tested him for Lyme Disease and Metal Toxidity. Has a Dr. mentioned ALS to your mom? I'm wondering why she would be so convinced that it must be ALS if the tests are coming back non-conclusive.
I hope this is of some help to you. It is a scary thing to think of but sometimes not knowing is worse. My best to your mother. Take care and don't give up - .
JMH
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Given the meds you are giving your mother I would think the docs are leaning towards Multi Focal Motor Neuropathy or Progressive Muscular Atrophy. Not having a diagnosis is harder I think than getting one. At least then you can get your affairs in order and plan things. With ALS the average is 2-5 years after Dx. With MMN or PMA the prognosis is years longer with slower progression. I hope your mother has one of these. Keep us in the loop please. AL.
 
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