Uncle diagnosed with ALS - now looking at MMN?

Status
Not open for further replies.

hollymonet

New member
Joined
Feb 1, 2021
Messages
2
Reason
Loved one DX
Diagnosis
00/0000
Country
UK
Hello,

My uncle was diagnosed as having ALS based on an EMG, hand weakness, and his leg tiring after walking. Since then he has seen an ALS specialist who ran a lot of tests. He told us that he 'may' have MMN and will try a treatment for this. My uncle has told us he shows a couple of markers that may suggest MMN and they will see what the treatment does. We are praying this will improve his condition and thankful for an alternative diagnosis.

Does anyone have any experience of this? - there doesn't seem to be a lot online. Could it still be ALS or are the markers for MMN very specific?
- We don't want to hassle him with too many questions.

Thanks
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,181
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Hi
sorry you had to find us. The answer is not straightforward. There is something on the nerve conduction test called conduction delay that suggests MMN. There also is a blood test that has markers that are supposed to be pretty specific. People with MMN do not have significant UMN signs on exam.

sometimes there is an ivig trial when there aren’t the first two signs and it is more the clinical presentation and a feeling of worth a try in case because not everyone with MMN has conduction delay or suggestive blood tests.
 

hollymonet

New member
Joined
Feb 1, 2021
Messages
2
Reason
Loved one DX
Diagnosis
00/0000
Country
UK
Hey Nikki,
Thank you for your reply and explanation.

I believe he only has lower signs as the original ALS diagnosis was the PMA variation. I suppose with whatever ‘markers’ the doctors found it does look quite hopeful - best to stay positive.
 
Status
Not open for further replies.
Top