elleforte
New member
- Joined
- Jun 29, 2016
- Messages
- 4
- Reason
- Learn about ALS
- Country
- US
- State
- MI
- City
- Detroit
This is my first time posting here. I have lurked around and could not find any threads talking about this so I thought I will post. If it is clear that I am not in an ALS / PLS or related category, I will be on my way.
Is anyone aware of a diagnosis that started out this way? Yours or that of someone you know?
The closest I have to a diagnosis is "Motor Neuron Syndrome" or called “Upper Motor Neuron Lesion” characterized by hyperreflexia, clonus, babinsky sign and hoffman sign, as well as spasticity that comes and goes based on my activity level. I have a left-sided foot drop where I am now unable to move my toes at all. I also have a right-side foot drop that is less severe and seems to come and go. Increase of my activity level increases my spasticity and overall disability. It has been 5 years since the labelling of this motor neuron problem (I was age 35) and my symptoms are getting increasingly worse. Even with small activity, I have spasticity that is so severe it impacts my ability to walk and move my arms. I manage my symptoms with a pain management doctor. Pain management helps with the muscle spasms and overall tightness. I do understand that pain is not often associated with PLS/ALS/MND. I use a cane when traveling or concerned about falls.
My CT, MR, and xRays show no lesions on brain or spinal cord - the "Upper Motor Neuron Lesion" diagnosis was made on clinical presentation with doctors saying that imaging machines must not be strong enough to show the lesion. My last brain MRI was in 2012 and it's probably time for another. I dread it - the first go 'round of doctors ended with lots of tears and lots of doctors who were baffled so they accused me - how does one fake a foot drop?!?
As I am getting worse, I am not sure who to go to - what medical specialist? I have been tested for so many things and the EMG findings along with the hyperreflexia, spasticity, foot drop and pathological babinsky and hoffman are the only clear symptoms.
Findings from my EMG:
:arrow:"Electromyographic findings are consistent with left upper motor neuron type weakness in left perineal muscle groups. I do not see any electromyographic evidence of the left perineal nerve palsy or left L5 radiculopathy at this time.
Nerve conduction study shows normal distal latency and conduction velocity of the left perineal nerve."
One of my doctors said, perhaps someday it will become clear that I have "PLS or ALS, or Multiple Sclerosis - that we can only wait and see."
If any of this sounds like anything you are familiar with, I would greatly appreciate your insights and recommendations or recommendations for specialists. I am in the US.
I am negative for Myasthenia Gravis and Charcot-Marie-Tooth.
Best wishes to all and I am so grateful to you for reading this,
Elle
Is anyone aware of a diagnosis that started out this way? Yours or that of someone you know?
The closest I have to a diagnosis is "Motor Neuron Syndrome" or called “Upper Motor Neuron Lesion” characterized by hyperreflexia, clonus, babinsky sign and hoffman sign, as well as spasticity that comes and goes based on my activity level. I have a left-sided foot drop where I am now unable to move my toes at all. I also have a right-side foot drop that is less severe and seems to come and go. Increase of my activity level increases my spasticity and overall disability. It has been 5 years since the labelling of this motor neuron problem (I was age 35) and my symptoms are getting increasingly worse. Even with small activity, I have spasticity that is so severe it impacts my ability to walk and move my arms. I manage my symptoms with a pain management doctor. Pain management helps with the muscle spasms and overall tightness. I do understand that pain is not often associated with PLS/ALS/MND. I use a cane when traveling or concerned about falls.
My CT, MR, and xRays show no lesions on brain or spinal cord - the "Upper Motor Neuron Lesion" diagnosis was made on clinical presentation with doctors saying that imaging machines must not be strong enough to show the lesion. My last brain MRI was in 2012 and it's probably time for another. I dread it - the first go 'round of doctors ended with lots of tears and lots of doctors who were baffled so they accused me - how does one fake a foot drop?!?
As I am getting worse, I am not sure who to go to - what medical specialist? I have been tested for so many things and the EMG findings along with the hyperreflexia, spasticity, foot drop and pathological babinsky and hoffman are the only clear symptoms.
Findings from my EMG:
:arrow:"Electromyographic findings are consistent with left upper motor neuron type weakness in left perineal muscle groups. I do not see any electromyographic evidence of the left perineal nerve palsy or left L5 radiculopathy at this time.
Nerve conduction study shows normal distal latency and conduction velocity of the left perineal nerve."
One of my doctors said, perhaps someday it will become clear that I have "PLS or ALS, or Multiple Sclerosis - that we can only wait and see."
If any of this sounds like anything you are familiar with, I would greatly appreciate your insights and recommendations or recommendations for specialists. I am in the US.
I am negative for Myasthenia Gravis and Charcot-Marie-Tooth.
Best wishes to all and I am so grateful to you for reading this,
Elle
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