Swaying towards ALS...?
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notme
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IT depends on whether or not the ALS has progressed to the limbs. Yes signs show up on EMG long before most notice problems--but if it's bulbar onset--there could well be nothing that shows on a limb EMG. (That's according to my ALS neuro) At least very early on--when someone goes to the doc because they notice very minor bulbar signs.
I've never had bulbar EMGs--nor would I. My paraspinals are bad--have been for at least 2 year--hence the bipap. But I'm not an expert. I only know what I've been told.
I do know that generally if an ALS specialist clears someone and doesn't use the "We need to see if you progress" line -- that the person is pretty well assured it's NOT ALS.
I've never had bulbar EMGs--nor would I. My paraspinals are bad--have been for at least 2 year--hence the bipap. But I'm not an expert. I only know what I've been told.
I do know that generally if an ALS specialist clears someone and doesn't use the "We need to see if you progress" line -- that the person is pretty well assured it's NOT ALS.
Nighthawk
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I think, in my particular case and long before even imagining it was ALS and seeking help from a Neuro, I had already Bulbar involvement as my colleagues at my workplace started to have difficulties to understand my talking, and had to ask me several times what I meant every time I said something.
I also noticed a spastic gait related to my left leg, and later on, fasciculations on my left arm (near the shoulder which indicated LMN damage which showed up on EMG). Although, I also had Ulnar Nerve Entrapment on my left elbow and it still puzzles me if that trapped nerve was related to ALS itself or some isolated condition.
When I decided to seek help all this clinical picture was already showing up and that's why my diagnosis was kind of easy to the Neuro specialist on ALS.
NH
I also noticed a spastic gait related to my left leg, and later on, fasciculations on my left arm (near the shoulder which indicated LMN damage which showed up on EMG). Although, I also had Ulnar Nerve Entrapment on my left elbow and it still puzzles me if that trapped nerve was related to ALS itself or some isolated condition.
When I decided to seek help all this clinical picture was already showing up and that's why my diagnosis was kind of easy to the Neuro specialist on ALS.
NH
notme
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I think Nighthawk, it may be a bit easier when it's Bulbar onset--as it seems like there are maybe less things to rule out? I dunno. I think there is just a lot doctors don't know--unfortunately. Were you already slurring when they tested your limbs? If so, it sounds like the ALS had been there a while before progressing to the point where it was noticed by you and others.
That's why we always try to tell people with symptoms and clean EMG and clinical exams they can stop worrying--as if it IS ALS--something will show--clinical signs or LMN issues on the eMG in the majority of cases. One or the other or both.
People in this area (the DIH area) worry about things like the occasional choking episode or a twitch in their tongue. We can't seem to help them understand that it's the presentation you describe that is more common--the slurred speech noted by others.
They don't seem to get the fact that by the time the fasciculations start for most--the damage is clear on the tests.
The ulnar nerve thing-- in my case complicates things for one doctor-but not the other two. Two think it's incidental--co-existing with whatever else is going on. It's kind of funny that it was the neurosurgeon I saw to "fix" my neck and back that first said he thought I had ALS two years ago. Too many things in too many areas that didn't fit the neck and back MRIs--and he's the one that found the fascis in my hands--I had never even noticed them. He pointed them out to me. I rarely see them in my nearly dead hand anymore--but they are in my right--though I only spot them accidentally if I happen to glance down and see them.
I've never been a twitcher--I'm a cramp and spasm issue person. But with me--weakness was what sent me to the doctor first. I was terrified when I couldn't push the buttons to unlock my car door. That was the first "failure" - the weakness was present for a while before along with cramps in them.
That's why we always try to tell people with symptoms and clean EMG and clinical exams they can stop worrying--as if it IS ALS--something will show--clinical signs or LMN issues on the eMG in the majority of cases. One or the other or both.
People in this area (the DIH area) worry about things like the occasional choking episode or a twitch in their tongue. We can't seem to help them understand that it's the presentation you describe that is more common--the slurred speech noted by others.
They don't seem to get the fact that by the time the fasciculations start for most--the damage is clear on the tests.
The ulnar nerve thing-- in my case complicates things for one doctor-but not the other two. Two think it's incidental--co-existing with whatever else is going on. It's kind of funny that it was the neurosurgeon I saw to "fix" my neck and back that first said he thought I had ALS two years ago. Too many things in too many areas that didn't fit the neck and back MRIs--and he's the one that found the fascis in my hands--I had never even noticed them. He pointed them out to me. I rarely see them in my nearly dead hand anymore--but they are in my right--though I only spot them accidentally if I happen to glance down and see them.
I've never been a twitcher--I'm a cramp and spasm issue person. But with me--weakness was what sent me to the doctor first. I was terrified when I couldn't push the buttons to unlock my car door. That was the first "failure" - the weakness was present for a while before along with cramps in them.
Notme,
When you realized you couldn't push buttons etc, did your neuro do an EMG to confirm that this was ALS related? Or did he/she suspect ALS when you first presented? Just wanting to know how your diagnosis was confirmed? If you don't mind sharing.
The advise and facts you have pointed out are very helpful.
Thank you again.
When you realized you couldn't push buttons etc, did your neuro do an EMG to confirm that this was ALS related? Or did he/she suspect ALS when you first presented? Just wanting to know how your diagnosis was confirmed? If you don't mind sharing.
The advise and facts you have pointed out are very helpful.
Thank you again.
notme
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Faith,
They don't know yet what I have. They just know that I have UMN dysfunction in my legs and LMN dysfunction in my arms. I'm officially "UMN dysfunction and R/O ALS" on paper. Who the heck knows. At this point--I don't even care anymore. What will be will be.
The first neuro thought it was my ruptured discs in my neck and sent me to a neurosurgeon. The neurosurgeon looked at my MRI's and at the fascis and atrophy in my hands and said he thought I had ALS.
ALS neuro isn't sure either after doing an EMG because I have a trapped nerve and mild carpal tunnel--but she doesn't want me to have surgery as she doesn't believe it's severe enough to have caused my level of disability based on NCV--but EMG showed both renervation and denervation in my arms--legs were clear other than neuropathy and issues from my spine. I have multiple health issues that complicate things. No one knows what is causing what for sure.
v
An ALS diagnosed requires UMN and LMN in 3 areas. I don't have that. I had one or the other in all areas tested--but not both detected in any region. I technically qualify as "probable ALS" by the criteria.
1. Signs of lower motor neuron (LMN) degeneration by clinical, electrophysiological or neuropathologic examination,
2. Signs of upper motor neuron (UMN) degeneration by clinical examination, and
3. Progressive spread of signs within a region or to other regions, together with the absence of:
* Electrophysiological evidence of other disease processes that might explain the signs of LMN and/or UMN degenerations; and
* Neuroimaging evidence of other disease processes that might explain the observed clinical and electrophysiological signs.
Clinically Probable - Laboratory Supported: is defined when clinical signs of UMN and LMN dysfunction are in only one region, or when UMN signs alone are present in one region, and LMN signs defined by EMG criteria are present in at least two limbs, with proper application of neuroimaging and clinical laboratory protocols to exclude other causes.
Clinically Probable ALS: is defined on clinical evidence alone by UMN and LMN signs in at least two regions with some UMN signs necessarily rostral to (above) the LMN signs.
That's what's required--and I have ruptured discs and trapped nerves--so it's going to take more progression to be sure what I've got. So although I have LMN in two arms and UMN in two legs and LMN in the paraspinal region--I have other things that 'could' be causing the problems.
It was only this week that LMN signs were discovered in my lower limbs. There are no UMN signs in the upper limbs--which means I don't have "Definite ALS". I'm in limboland along with lots of others. My clinical exam has been abnormal since day one, as was the EMG.
They don't know yet what I have. They just know that I have UMN dysfunction in my legs and LMN dysfunction in my arms. I'm officially "UMN dysfunction and R/O ALS" on paper. Who the heck knows. At this point--I don't even care anymore. What will be will be.
The first neuro thought it was my ruptured discs in my neck and sent me to a neurosurgeon. The neurosurgeon looked at my MRI's and at the fascis and atrophy in my hands and said he thought I had ALS.
ALS neuro isn't sure either after doing an EMG because I have a trapped nerve and mild carpal tunnel--but she doesn't want me to have surgery as she doesn't believe it's severe enough to have caused my level of disability based on NCV--but EMG showed both renervation and denervation in my arms--legs were clear other than neuropathy and issues from my spine. I have multiple health issues that complicate things. No one knows what is causing what for sure.
v
An ALS diagnosed requires UMN and LMN in 3 areas. I don't have that. I had one or the other in all areas tested--but not both detected in any region. I technically qualify as "probable ALS" by the criteria.
1. Signs of lower motor neuron (LMN) degeneration by clinical, electrophysiological or neuropathologic examination,
2. Signs of upper motor neuron (UMN) degeneration by clinical examination, and
3. Progressive spread of signs within a region or to other regions, together with the absence of:
* Electrophysiological evidence of other disease processes that might explain the signs of LMN and/or UMN degenerations; and
* Neuroimaging evidence of other disease processes that might explain the observed clinical and electrophysiological signs.
Clinically Probable - Laboratory Supported: is defined when clinical signs of UMN and LMN dysfunction are in only one region, or when UMN signs alone are present in one region, and LMN signs defined by EMG criteria are present in at least two limbs, with proper application of neuroimaging and clinical laboratory protocols to exclude other causes.
Clinically Probable ALS: is defined on clinical evidence alone by UMN and LMN signs in at least two regions with some UMN signs necessarily rostral to (above) the LMN signs.
That's what's required--and I have ruptured discs and trapped nerves--so it's going to take more progression to be sure what I've got. So although I have LMN in two arms and UMN in two legs and LMN in the paraspinal region--I have other things that 'could' be causing the problems.
It was only this week that LMN signs were discovered in my lower limbs. There are no UMN signs in the upper limbs--which means I don't have "Definite ALS". I'm in limboland along with lots of others. My clinical exam has been abnormal since day one, as was the EMG.
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Nighthawk
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Notme,
Yes, I was already slurring when I went to see the ALS Specialist.
The time frame was like this: I did notice some slurring in February, 2011 while still working, which got worse over time, but...I did go to see the Specialist in...December that same year.
You see? I waited too long to seek help because I didn't understand the "signals" my body was sending me at that time.
And yes, ALS Bulbar onset is a "walk in the park" for Neuros who are looking to diagnose this disease. Unless it was a Stroke but, that's why they perform MRI of the brain, to rule out Stroke.
Limb onset is more tricky because it could be something else and that's why they (the Specialists) play the "wait and see approach" on this one.
UMN is also easy to spot because it's done exclusively by following what the "textbooks" say (hyperreflexia, clonus, spasticity, Babinski, etc.)
That's why some us us are diagnosed easier than others.
NH
Yes, I was already slurring when I went to see the ALS Specialist.
The time frame was like this: I did notice some slurring in February, 2011 while still working, which got worse over time, but...I did go to see the Specialist in...December that same year.
You see? I waited too long to seek help because I didn't understand the "signals" my body was sending me at that time.
And yes, ALS Bulbar onset is a "walk in the park" for Neuros who are looking to diagnose this disease. Unless it was a Stroke but, that's why they perform MRI of the brain, to rule out Stroke.
Limb onset is more tricky because it could be something else and that's why they (the Specialists) play the "wait and see approach" on this one.
UMN is also easy to spot because it's done exclusively by following what the "textbooks" say (hyperreflexia, clonus, spasticity, Babinski, etc.)
That's why some us us are diagnosed easier than others.
NH
Notme,
I'm so happy to hear you have not been given a definite diagnose of ALS! Your symptoms are obviously consistant with some type of motor neuron issue...but there is a chance that you could make a recovery or manage this in some way?
Your symptoms may still be Fibro related?
My mother & sister noticed a dent on the outside of my L lower leg/calf area, this is where I get my terrible pains and cramps! Is this atrophy? My R lower leg & calf area is well smoothed and has no dents and feels much more firmer compared to my L calf. Does this mean that I have signs of muscle wasting in my L calf?
I won't be seeing another neuro for a few weeks.
I'm so happy to hear you have not been given a definite diagnose of ALS! Your symptoms are obviously consistant with some type of motor neuron issue...but there is a chance that you could make a recovery or manage this in some way?
Your symptoms may still be Fibro related?
My mother & sister noticed a dent on the outside of my L lower leg/calf area, this is where I get my terrible pains and cramps! Is this atrophy? My R lower leg & calf area is well smoothed and has no dents and feels much more firmer compared to my L calf. Does this mean that I have signs of muscle wasting in my L calf?
I won't be seeing another neuro for a few weeks.
notme
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No, Faith--dents aren't atrophy. I wish you could see my hands--atrophy isn't guesswork. It's all too obvious. My old CNA students could see it--and they didn't even know what the term meant.
My family have noticed my speech not being quite right. I feel I have a lazy mouth movement if that makes sence. I'm always clearing my throught, been chocking on water & saliva at least 5 times per week & I do sound crowky - as if I had a cold. My EMG in Jan this year checked my tongue region which was clear? Would a dirty EMG be needed to confirm ALS in the bulbar region?
My fasics are very annoying, especially when I'm at rest. What can I take or do?
My fasics are very annoying, especially when I'm at rest. What can I take or do?
notme
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With symptomatic bulbar signs either the EMG woudl show something or the exam would.
I dont' know what to tell you other than to ask the GP. I don't know what is causing the issues if the EMG and exam are normal. Have they tried swallow studies?
I dont' know what to tell you other than to ask the GP. I don't know what is causing the issues if the EMG and exam are normal. Have they tried swallow studies?
Hi everybody - I am new to this, and wouldn't know where to begin. I read all entries carefully, and felt sad and discouraged by all the suffering, physical and psychological every one of you experienced. I also know I am far less courageous than any of you here, and probably never will manage to share my story, mostly for fear I may discover what I've been chasing for 2 1/2 years. I want an answer, but I dread it too. I was passionate in my quest for a diagnosis, and the more closed doors ( too many in neurology,) the more zeal I put into it. I kept a diary of symptoms as one tends to forget the chronology, I saw doctors, I had tests, I refused to see doctors, I hoped, I spent thousands in alternative treatments, then eventually went back and started from scratch. It's agony and ecstasy, and my life as I knew it isn't anymore. Needless to say I relate to Faith7 so much so that I almost guessed her next question after a while. Not knowing is almost as bad as knowing the worst. The way neurology specifically is practiced today is frustrating for both doctor and patient. That is particularly true when it comes to tests, their interpretation, and criteria for Dx. As medication and treatment in this area are costly, a diagnosis based on symptoms alone is almost always done late in a disease, when there can be no question of it being anything else. ALS is no exception. Even without a particular treatment, this pest ends up being very expensive , as it has so many ramifications of care. Therefore, we, the undiagnosed, come here to feel understood, to compare and contrast, to get a little light in what's going on with us (few of the healthy people we know will ever begin to grasp,) to find name of good doctors and clinics, and frankly, to hope. Don't push us aside, many of us do not have the luxury of going any other place for this. I have seen threads ending with a question or concern nobody cared to address. How lonesome.
maralact,
I completely understand and agree with what you are saying. The fact that you have had your symptoms for 2 1/5yrs is somewhat reassuring I believe as if there were any signs of ALS surely your EMG would have shown some changes by now. Have you had one done?
I had an appt yesterday with another neuro who does EMG's and she informed me that it was "too early" to repeat my EMG as it hasn't been 6 months as yet from my first one. I am now on the "waiting lets see" path which is emotionally exhausting! I want answers! I want to know why I'm feeling this way! My symptoms aren't getting any better and it's damn frustrating when you get told to wait and see.
Not fair
I completely understand and agree with what you are saying. The fact that you have had your symptoms for 2 1/5yrs is somewhat reassuring I believe as if there were any signs of ALS surely your EMG would have shown some changes by now. Have you had one done?
I had an appt yesterday with another neuro who does EMG's and she informed me that it was "too early" to repeat my EMG as it hasn't been 6 months as yet from my first one. I am now on the "waiting lets see" path which is emotionally exhausting! I want answers! I want to know why I'm feeling this way! My symptoms aren't getting any better and it's damn frustrating when you get told to wait and see.
Not fair
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