stargrave
Member
- Joined
- Feb 14, 2010
- Messages
- 10
- Reason
- Learn about ALS
- Country
- Mex
- State
- DF
- City
- Mexico City
Hello everybody.
I might be the 10000 "client" of the board, trying to get some answers about ALS/MND.
Let me tell you that I'm quite aware of how much time/trials/test/appointments are needed for an ALS, more so because the obvious precautions the doctors have, before doing it so.
I also know how much symptoms/onset of symptoms ALS shares with many other neurological conditions MS/Fibro/Lyme/etc.
So, here is my case and question(maybe both old stuff for you, so be patient, please).
The Case:
I came for the neurologist because I felt numbness on my left arm and leg, and some clumsiness, after a brief dizzy spell. I didn't gave much attention to the dizzies, cause I've been diagnosed with a right ear vestibular weakness in 2006.
I waited for two days but the symptom didn't recede, no headaches, and no much more. I feared for a TIA. One day after my neurologist appointment I fell numbness in my left side, on my shoulder and back to be precise.
This all evolved to numbness and tingling, with mild weaknes and clumsiness, mostly concentrated on my hands and legs(from knee down to my foot, and from my elbow down to my hand) "socks and gloves" the doctor called it.
So he gave me several tests, strength, coordination, balance, sensor, the whole stuff, I came out pretty normal. So he decided to "spare" me the EMG test, and prescribed me Lyrica, blaming a neuropathy, possibly from chemical exposure, for my symptoms.
So when I checked out the term on the net both ALS and Guillaume Barre, and many other similar conditions, came across, so I felt ill.
I panicked up to the point that I ended on an ER room with a "false heart attack", they tested me both taking blood tests and with an Electrocardiogram.
I came home with a friend of mine which is an internist, and he suggested me to take clonazepam first to take control of the panic attacks, and because of the side effects of Lyrica, that "could drive you nuts before it can give you any symptom relief".
Because I didn't have any real pain back then, but some tingling and numbness, and knowing that Lyrica won't "cure", but just ease up, my symptoms, specially pain, which was absent at that moment, I took the cloazepam way, because before that I couldn't even get 3 hours of sleep, and I was really close to loose it.
Fast forward, pain came, some weakness, and so I came decided, bring me the EMG...
It was a torture to me because I hate needles, but here is what the neurophysiologist said:
"SEQUELS(this was really strange to me) of a self-limited pure motor polyneuropathy of unknown etiology(I hate when they say unknown)".
He said this(on the report) because he found "some mild denervation, but also traces of mild reinervation, and no sign of active denervation on any of the sites explored".
I even remember that he asked me if I've experienced symptoms before, and I answered, It all started mid January this year... He believes this was older..
The Neurologist, confirmed, sort of, his first impressions, and he told me it was a recovery road from here...
Not so true in my case as I began to feel a lot of "new" or "improved" symptoms, practically from the day after my EMG to date...
Fasciculations all over my body(eyes, arms, fingers, legs, you name it), I did had some before the test, but I don't remember so many, and in so many places. Not permanent, but they kind of make their presence clear during the day.
Before that, just the day after my EMG, I thought that, as I was "cleared", it was the right moment to get back my daily 30 min cardio-workout on my elliptical bike, which I left when the symptoms, and which I also endured pretty well... Os so I thought until the next day I felt like I just ran a marathon while carrying an elephant... I was completely wasted.
I just thought "why does this all happened after the EMG?". And those are my daily symptoms, weakness, fatigue and fasciculations. Can't tell for sure if they're progressing, receding, or are just about the same. Sometimes I feel almost clear of all, a nd sometimes I want to run(even with the clonazepam) to the ER room again.. Pain has receded a little, or to be more precise it changed from the burning/tingling/pins and needles stuff, to something more muscular/joint aching type of pain, but mostly the tiredness.
Add to that feeling a weird gag reflex, like a gulp, and a dry mouth, and sometimes a weird swallowing feeling.... I know that anxiety can be the cause but....
To complicate things further I just got the worst cold I've experienced in years...(no fever tough). And now I have some respiratory issues, that give me the ALS creeps, like shorthess of breath, you know the drill...
Finally, the questionssorry if they sound absurd)
1. Is there any chance that, I came a day early to the EMG, or that the neurophysiologist got the bad accuracy to miss an "important" spot? I ask this cause the "improved" fasciculations. Or if it was ALS, those already tested(and damaged) spots, should have been with an active denervation process, and not with an apparent "recovery", as it was shown by the EMG.
2. I've read that recovery from a peripheral neuropathy can take weeks, so could this be just "sequels" as my doctor called them, from a previous problem? What could be a clear cut difference between both situations?
3. About that last point, How could I miss something so bothersome as a Neuropathy, and just now I felt the symptoms?
I know I have to discuss this with my doctors but, I needed to talk about it, and hear some word of advice. Thank you for your patience, and the best health for all...
I might be the 10000 "client" of the board, trying to get some answers about ALS/MND.
Let me tell you that I'm quite aware of how much time/trials/test/appointments are needed for an ALS, more so because the obvious precautions the doctors have, before doing it so.
I also know how much symptoms/onset of symptoms ALS shares with many other neurological conditions MS/Fibro/Lyme/etc.
So, here is my case and question(maybe both old stuff for you, so be patient, please).
The Case:
I came for the neurologist because I felt numbness on my left arm and leg, and some clumsiness, after a brief dizzy spell. I didn't gave much attention to the dizzies, cause I've been diagnosed with a right ear vestibular weakness in 2006.
I waited for two days but the symptom didn't recede, no headaches, and no much more. I feared for a TIA. One day after my neurologist appointment I fell numbness in my left side, on my shoulder and back to be precise.
This all evolved to numbness and tingling, with mild weaknes and clumsiness, mostly concentrated on my hands and legs(from knee down to my foot, and from my elbow down to my hand) "socks and gloves" the doctor called it.
So he gave me several tests, strength, coordination, balance, sensor, the whole stuff, I came out pretty normal. So he decided to "spare" me the EMG test, and prescribed me Lyrica, blaming a neuropathy, possibly from chemical exposure, for my symptoms.
So when I checked out the term on the net both ALS and Guillaume Barre, and many other similar conditions, came across, so I felt ill.
I panicked up to the point that I ended on an ER room with a "false heart attack", they tested me both taking blood tests and with an Electrocardiogram.
I came home with a friend of mine which is an internist, and he suggested me to take clonazepam first to take control of the panic attacks, and because of the side effects of Lyrica, that "could drive you nuts before it can give you any symptom relief".
Because I didn't have any real pain back then, but some tingling and numbness, and knowing that Lyrica won't "cure", but just ease up, my symptoms, specially pain, which was absent at that moment, I took the cloazepam way, because before that I couldn't even get 3 hours of sleep, and I was really close to loose it.
Fast forward, pain came, some weakness, and so I came decided, bring me the EMG...
It was a torture to me because I hate needles, but here is what the neurophysiologist said:
"SEQUELS(this was really strange to me) of a self-limited pure motor polyneuropathy of unknown etiology(I hate when they say unknown)".
He said this(on the report) because he found "some mild denervation, but also traces of mild reinervation, and no sign of active denervation on any of the sites explored".
I even remember that he asked me if I've experienced symptoms before, and I answered, It all started mid January this year... He believes this was older..
The Neurologist, confirmed, sort of, his first impressions, and he told me it was a recovery road from here...
Not so true in my case as I began to feel a lot of "new" or "improved" symptoms, practically from the day after my EMG to date...
Fasciculations all over my body(eyes, arms, fingers, legs, you name it), I did had some before the test, but I don't remember so many, and in so many places. Not permanent, but they kind of make their presence clear during the day.
Before that, just the day after my EMG, I thought that, as I was "cleared", it was the right moment to get back my daily 30 min cardio-workout on my elliptical bike, which I left when the symptoms, and which I also endured pretty well... Os so I thought until the next day I felt like I just ran a marathon while carrying an elephant... I was completely wasted.
I just thought "why does this all happened after the EMG?". And those are my daily symptoms, weakness, fatigue and fasciculations. Can't tell for sure if they're progressing, receding, or are just about the same. Sometimes I feel almost clear of all, a nd sometimes I want to run(even with the clonazepam) to the ER room again.. Pain has receded a little, or to be more precise it changed from the burning/tingling/pins and needles stuff, to something more muscular/joint aching type of pain, but mostly the tiredness.
Add to that feeling a weird gag reflex, like a gulp, and a dry mouth, and sometimes a weird swallowing feeling.... I know that anxiety can be the cause but....
To complicate things further I just got the worst cold I've experienced in years...(no fever tough). And now I have some respiratory issues, that give me the ALS creeps, like shorthess of breath, you know the drill...
Finally, the questionssorry if they sound absurd)
1. Is there any chance that, I came a day early to the EMG, or that the neurophysiologist got the bad accuracy to miss an "important" spot? I ask this cause the "improved" fasciculations. Or if it was ALS, those already tested(and damaged) spots, should have been with an active denervation process, and not with an apparent "recovery", as it was shown by the EMG.
2. I've read that recovery from a peripheral neuropathy can take weeks, so could this be just "sequels" as my doctor called them, from a previous problem? What could be a clear cut difference between both situations?
3. About that last point, How could I miss something so bothersome as a Neuropathy, and just now I felt the symptoms?
I know I have to discuss this with my doctors but, I needed to talk about it, and hear some word of advice. Thank you for your patience, and the best health for all...