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BlueTrain

Member
Joined
Jun 8, 2015
Messages
25
Reason
PALS
Diagnosis
01/2016
Country
CA
State
Maritimes
City
LC
I decided to write this message as I understand that my first post in the DIHALS section has caused some concern among some of our undiagnosed members. The purpose of this post is to clarify a few things and to explain why you should not compare your situations with mine.

To begin with, at no time during the diagnostic process did any neurologist tell me that I was fine. For example, my first neurologist’s eyes widened when he tested my reflexes. After my wife and I joked that I was probably going crazy, he looked at us and said “guys, this is no joke. This is serious”.

Secondly, as I saw more doctors and was subjected to more of the same tests, not once did I have a normal clinical examination. I was always very hyper-reflexive in my lower extremities, had clonus in both my ankles and my knees, and my gait was spastic (I had a lot of trouble walking). In other words, the upper motor neuron dysfunction was clearly evident every step of the way.

Although I did have several clean emgs prior to my diagnosis, my twitching was continuous and constant in virtually every muscle group of my body. And again, from day one, my upper motor neuron issues were always present and they continued to progress. Over the course of a year and several months, I went from walking with slight difficulty to using a cane and doing face plants in my driveway.

I will admit that I did experience a lot of pain in my legs when my symptoms first began, which is uncommon in ALS. However, this was likely due to the very sudden onset of the disease, as my symptoms started almost overnight. Plus, it is generally recognized that upper motor neuron dysfunction (i.e. spasticity, the “shortening” of the muscles, etc.) can be very painful in certain situations.

Finally, and perhaps most importantly, every doctor I’ve seen has noted that my presentation is very atypical. I was diagnosed with UMN dominant ALS (rare) at a young age (even more rare) with a very bizarre presentation of symptoms (extremely rare).

Please do not let the fear of ALS ruin your lives. Take it from me and from all of those directly affected by the disease - ALS itself ruins far too many lives already.

Thomas
 
As a fellow UMN sufferer, I would like to add my two cents here. If you have any form of MND, doctors know there is something wrong pretty early in the game. You walk weird. Your reflexes are not normal. Your body does not respond in a normal and healthy manner to the usual clinical neurological tests. Even if there's no immediate sign of ALS on the EMG, there are changes to recruitment patterns and the like that do not show on "normal" EMGs. Yes, even people who have strictly UMN signs (PLS, HSP) have odd findings in EMG studies.

Thank you Thomas, for following up and making it clear to those with questions about UMN onset ALS. And for making it clear to those who are using your "story" to try to convince themselves that maybe they still have ALS even if the EMG was clear.
 
Well said, Thomas. Thank you for taking the time.

Best,
Laurie
 
Very clear thanks Thomas, we will redirect people here when they try to quote you as an example!
 
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