Cybele
New member
- Joined
- Apr 29, 2015
- Messages
- 7
- Reason
- Learn about ALS
- Country
- US
- State
- Illinois
- City
- Chicago
Hello Friends:
I've been reading this board since January and understand the stickies and also have great admiration for the time and effort you'll spend talking to undiagnosed Joe Blows out here who are just worried out of their minds.
That said...
In December, I had a strange incident happen where I was running across a big boulevard with a backpack and when my left foot hit the cement, I felt something like hot glass running down my back. I walked the rest of the way home and then felt a burning pain in my pelvic girdle and when I woke up the next day was suddenly very unsteady on my feet and *very weak* in the arms and legs. Doing any kind of exercise made me shake, but the scarier part was *fasciculations* popping all over my body -- arms, legs, and torso - and "lhermittes sign" when I put my head down.
After this I was shaking two ways -- my head would go back and forth and my body would shake and tremor. It was very frightening and worrying, got a neck MRI that showed a herniated disc at c5-c6, no broken bones. They did not check my lumbar spine for herniations. I was told the general things you're told about this. I wore a cervical collar and figured I would just have to rest and wait to feel better.
Thing is I am not getting better. In fact I just got more and more tired. Some of the neck pain went away but the neck is still horribly weak and I had these spells where I'll just sweat and shake. Last month I went to the ER and they told me my potassium was 2.9.
For months now I have true generalized and localized weakness; my back, legs and arms shake on exertion. Fasciulations continue, especially when I am in bed at night.
I am calling this a fasciculation -- especially on the back of my neck when I lie on my back. It feels like a pulsing vibration, like the back of my neck is a guitar and someone is thrumming the strings of it all night long, continuously, all the way up to the top of my head. Sometimes that makes my cheek vibrate and my right eyelid twitch. My lower lip trembles sometimes. My legs wobble in certain positions lying down and just recently I have deep pains at the site of the herniation and in the small of my back.
I also have a hard time talking. Not at first, but if I have to talk for a long time my jaws get really tired and it seems like a massive effort to speak. I've swallowed my own saliva a couple times, things have just "gone down the wrong way" more often in the past couple of months. Sometimes my tongue feels swollen, or like I can't get it to sit the right way in my mouth.
I have a continuing problem with the index finger of my left hand. Feels stiff and sometimes grabbing things, or for things, doesn't work and it will drop out of my hand. It seems like my entire left side, including my intracoastals and hip -- are much much weaker than my right side, in fact I lean to the right and in the past couple months have felt tippy on my feet.
I have neuropathic chills across my back, burning and radiculopathies down to my toes when I lie down. I have twitches in my hands -- but these are pretty minor and if not for the other things I wouldn't worry about it too much. Other odd sensations. Kneebuzzing. Aches in my feet and hands. Vertigo. It feels like my head is wobbling on my neck.
No tongue fasciculations. Checked by me and by a neurologist.
I have a strange wobbly feeling in my calves, like they want to give way -- or like the nerves are under extreme stress trying to keep me upright.
I have read enough here to know that a lot of these things are not associated with ALS -- I have read all your kind replies to people going; " this is not, I repeat NOT ALS" and I'm gauging my symptoms very carefully against what you all are saying here. These are the symptoms that really concern me:
Unrelenting vibrating in the back of my neck when I lie down.
Facial twitches and lip trembling.
Muscle weakness in all four limbs ( perceived;I am passing with the doc and the neuro)
Fasciculations/spasms in my back and hip when I lie down.
Weak/stiff left index finger
shoulder girdle and neck weakness
Morning headache (new)
But *most importantly* -- fatigue. I am so tired. I wake up in the morning and I feel okay ( aside from the vibrating I wake up with) and wander around for a while. My body seems to work okay. But a couple hours later I am *done*. So tired. Taking a shower wipes me out for hours. My neck and shoulders will be exhausted and my arms will be shaking. I need to rest my body and I'll spend the afternoon just lying on my back. I went for a walk with my son the other day and the backs of my thighs hurt as if I were doing some kind of marathon workout. My knees hurt and I have never had that before;I think it's because my thighs are weak. I also have very little mental energy and sometimes forget things for a second like the name of the next street down. I have lost my appetite; my stomach is not working correctly. When I look back at the past couple months it seems like I remember being much better four months ago,three months ago, and so on.
I sleep 16 hours a day sometimes. Sometimes I feel flushed, sometimes I feel chilled, sometimes a slight fever and my vision seems worse. I do not have syphilis, lyme disease, hepatitis a b or c or an autoimmune disorder. I am 50 and menopausal.
The reason I am asking here if this sounds like ALS is because I know that sometimes the cervical disc spine thing can waste time getting to the real diagnosis from what I've read. I also know that it will take time (way too much) and effort to go through all the steps to get there and I have so little energy as it is. I am scheduled for a lumbar MRI but I would hate to sit here waiting for my "back issues to resolve" if I should really be pursuing something else. I also know that a person can have herniated discs *and* ALS, it seems possible that people get them because the rest of their muscles are weakening.
Thank you very very much for reading this and for your time.
I've been reading this board since January and understand the stickies and also have great admiration for the time and effort you'll spend talking to undiagnosed Joe Blows out here who are just worried out of their minds.
That said...
In December, I had a strange incident happen where I was running across a big boulevard with a backpack and when my left foot hit the cement, I felt something like hot glass running down my back. I walked the rest of the way home and then felt a burning pain in my pelvic girdle and when I woke up the next day was suddenly very unsteady on my feet and *very weak* in the arms and legs. Doing any kind of exercise made me shake, but the scarier part was *fasciculations* popping all over my body -- arms, legs, and torso - and "lhermittes sign" when I put my head down.
After this I was shaking two ways -- my head would go back and forth and my body would shake and tremor. It was very frightening and worrying, got a neck MRI that showed a herniated disc at c5-c6, no broken bones. They did not check my lumbar spine for herniations. I was told the general things you're told about this. I wore a cervical collar and figured I would just have to rest and wait to feel better.
Thing is I am not getting better. In fact I just got more and more tired. Some of the neck pain went away but the neck is still horribly weak and I had these spells where I'll just sweat and shake. Last month I went to the ER and they told me my potassium was 2.9.
For months now I have true generalized and localized weakness; my back, legs and arms shake on exertion. Fasciulations continue, especially when I am in bed at night.
I am calling this a fasciculation -- especially on the back of my neck when I lie on my back. It feels like a pulsing vibration, like the back of my neck is a guitar and someone is thrumming the strings of it all night long, continuously, all the way up to the top of my head. Sometimes that makes my cheek vibrate and my right eyelid twitch. My lower lip trembles sometimes. My legs wobble in certain positions lying down and just recently I have deep pains at the site of the herniation and in the small of my back.
I also have a hard time talking. Not at first, but if I have to talk for a long time my jaws get really tired and it seems like a massive effort to speak. I've swallowed my own saliva a couple times, things have just "gone down the wrong way" more often in the past couple of months. Sometimes my tongue feels swollen, or like I can't get it to sit the right way in my mouth.
I have a continuing problem with the index finger of my left hand. Feels stiff and sometimes grabbing things, or for things, doesn't work and it will drop out of my hand. It seems like my entire left side, including my intracoastals and hip -- are much much weaker than my right side, in fact I lean to the right and in the past couple months have felt tippy on my feet.
I have neuropathic chills across my back, burning and radiculopathies down to my toes when I lie down. I have twitches in my hands -- but these are pretty minor and if not for the other things I wouldn't worry about it too much. Other odd sensations. Kneebuzzing. Aches in my feet and hands. Vertigo. It feels like my head is wobbling on my neck.
No tongue fasciculations. Checked by me and by a neurologist.
I have a strange wobbly feeling in my calves, like they want to give way -- or like the nerves are under extreme stress trying to keep me upright.
I have read enough here to know that a lot of these things are not associated with ALS -- I have read all your kind replies to people going; " this is not, I repeat NOT ALS" and I'm gauging my symptoms very carefully against what you all are saying here. These are the symptoms that really concern me:
Unrelenting vibrating in the back of my neck when I lie down.
Facial twitches and lip trembling.
Muscle weakness in all four limbs ( perceived;I am passing with the doc and the neuro)
Fasciculations/spasms in my back and hip when I lie down.
Weak/stiff left index finger
shoulder girdle and neck weakness
Morning headache (new)
But *most importantly* -- fatigue. I am so tired. I wake up in the morning and I feel okay ( aside from the vibrating I wake up with) and wander around for a while. My body seems to work okay. But a couple hours later I am *done*. So tired. Taking a shower wipes me out for hours. My neck and shoulders will be exhausted and my arms will be shaking. I need to rest my body and I'll spend the afternoon just lying on my back. I went for a walk with my son the other day and the backs of my thighs hurt as if I were doing some kind of marathon workout. My knees hurt and I have never had that before;I think it's because my thighs are weak. I also have very little mental energy and sometimes forget things for a second like the name of the next street down. I have lost my appetite; my stomach is not working correctly. When I look back at the past couple months it seems like I remember being much better four months ago,three months ago, and so on.
I sleep 16 hours a day sometimes. Sometimes I feel flushed, sometimes I feel chilled, sometimes a slight fever and my vision seems worse. I do not have syphilis, lyme disease, hepatitis a b or c or an autoimmune disorder. I am 50 and menopausal.
The reason I am asking here if this sounds like ALS is because I know that sometimes the cervical disc spine thing can waste time getting to the real diagnosis from what I've read. I also know that it will take time (way too much) and effort to go through all the steps to get there and I have so little energy as it is. I am scheduled for a lumbar MRI but I would hate to sit here waiting for my "back issues to resolve" if I should really be pursuing something else. I also know that a person can have herniated discs *and* ALS, it seems possible that people get them because the rest of their muscles are weakening.
Thank you very very much for reading this and for your time.
