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TonyEmber

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Joined
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Reason
DX MND
Diagnosis
10/2017
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IRL
State
Galway
Hi everyone,

I'm very grateful to reach out to the resources on this forum. I've read through the most read posts and have good cause for concern.

I'm not sure what information to give you, I believe the most important is the EMG results. My first EMG in October showed extensive motor neuron damage in 3/10 areas. I've been told by the neurologist that it indicates upper and lower motor neurons. The second EMG was in February, last week I met a different neurologist, she told me the motor neuron damage had spread. That's all I could find out from her. They have said it's not ALS because I am recovering some mobility after losing it.

I have been checked for all other causes of motor neuron damage including IVIG treatment, MRIs, CAT scans, blood tests. They they have all been clear. As for fasciculations muscle loss overall body weakness, I spend every day fighting to stretch my fingers out straight to practice heel toe walking which I can only do as long as my legs are strong enough to hold me up. The attitude of the consultant's is that I'm too healthy to have that much motor neuron damage, so I can't be diagnosed with ALS.

My health is degenerating, despite everything I do, I don't even drink coffee any more. Neurological symptoms I've had over the last few years have led to the discovery of motor neuron damage which is getting worse and yet I remain undiagnosed. The ambiguity is an obstacle in the receiving proper support and informing healthcare professionals about how to respond to my degenerating condition.

I welcome your questions, I have my medical files until the end of last year and happy to share whatever information you think would be useful.

thanks
Ember
 

Nikki J

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7,946
Reason
PALS
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04/2014
Country
US
State
MA
If you post your actual EMG reports we might understand better. Both the impression and the charts with the columns and numbers.

Did you see Orla Hardiman?
 

TonyEmber

New member
Joined
Mar 27, 2018
Messages
3
Reason
DX MND
Diagnosis
10/2017
Country
IRL
State
Galway
I have the reports on CD, but my laptop doesn't have CD drive. I'll try to access and uplaod tomorrow.

(from my printed copy)

right tibialis anterior 12mv
right medial gastrocnemius 9mv
left tibial anterior 4mv
left medial gastrocnemius 3mv
right vastus medialis 18mv
left vastus medialis 4 mv
right extensor digitorum communis 4mv
right first dorsal interosseous 4mv
left triceps 4mv
left deltoid 3.5mv

'chronic partial denervation'

my first consultant wanted to put me on Riluzole but i declined until i had a clearer diagnosis, he told me he would diagnose me with ALS except that I can still walk and go upstairs (very limited in both) and that it was exceptional to walk with this level of motor neuron damage.
 

Nikki J

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Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
That isn’t what we need to see. The columns should have fibs, psws, fasc potentials, recruitment etc on top and the tested muscles on the side

If you only have chronic denervation that would explain why you don’t have a diagnosis.

If you have not been to Professor Hardiman you should

It will be great when you are able to post the reports
 

TonyEmber

New member
Joined
Mar 27, 2018
Messages
3
Reason
DX MND
Diagnosis
10/2017
Country
IRL
State
Galway
Nikki,

THat information isn't in my medical file - all i have is a summary from which i've extracted the above information. I have all the other scans mri etc but not those details. i will try to get them, but it may take some time.

What does chronic denervation signify ?
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,946
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
often not much of anything. Old injury sometimes

ALS will show acute and chronic denervation both in multiple muscle groups

You should have the ability to request records but if a neurologist has raised the issue on MND you should be able to get seen by a neuromuscular specialist who can explain both EMG and clinical exam findings and again I suggest Professor Hardiman
 
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