Jaime K.
Member
- Joined
- Oct 18, 2009
- Messages
- 18
- Reason
- Learn about ALS
- Country
- US
- State
- NY
- City
- Etna
Hi everyone,
I posted a few months back about some worrying symptoms that might indicate ALS. The following is the original post:
I'm a 29 year old woman with some worrying symptoms. I'm hoping you can help shed some light on this. Here be my (lengthy) story:
About 2 1/2 months ago, I noticed my hands were becoming rigid in their movements. I am a musician, and started noticing the rigidity when I practiced or taught violin. This rigidity soon spread to both arms, and I also began to notice it in the legs, feet, and back. It worsens every day.
The rigidity is what a previous doctor has called a "cogwheel" effect - a "chink-chink-chink" movement of the muscle rather than a fluid motion. She said she had only seen it in Parkinson's patients, but left it at that. It is very visible - I can even feel it in my back if I bend over to pick something up - chink-chink-chink. I also hear it in my breathing - a light hitching. Doing a basic neuro exam with my doctor, I can touch my nose with my finger and then his hand, but the movement is a little jerky and twitchy. While at rest, the rigid sensation is very much like when you're out in the cold and your muscles get stiff and freeze up. However, I have no tremors.
As for pain, I have on and off cramping now in my hands, and an on and off burning sensation in the tops of my feet (where you'd tie the shoe laces). That burning isn't like a muscle burn - it's literally like I'm too close to the fireplace.
I have twitching muscles everywhere, especially after I have moved that particular muscle. Any exertion makes the muscle tremble. Even smiling makes my lips/cheeks tremble.
I have read that ALS includes muscle weakness, and this is where I am confused. I am not weak in the sense of grasping or turning knobs. I can squeeze things quite tightly. I can pick up my cat, grocery bags, violin case, etc. I can even hop up the staircase (though I pay for it with burning legs). However, holding something up, such as the violin, makes the muscle burn within seconds, like I've been working out all day. That is the fatigue/weakness I have. Every movement, especially in the arms, leads to a muscle burn.
As for doctors and diagnoses - the first doctor I saw thought it was stress and that it was all in my head. Another doctor could not see the rigidity even though I could see it and clearly feel it (again, all in my head). The third placed his hand on my arm and felt the rigidity (yay - not in my head!), ordered a bunch of blood tests, and referred me to a rheumatologist, whom I have yet to see. All we know from the blood tests is that the muscles are inflamed. His preliminary diagnosis was polymyalgia rheumatica. I'm not so sure (especially as it is very, very rare in folks my age, and the symptoms don't quite fit).
So...that brings me here. What do you all think?
* * *
Since then, the burning sensation has gone and I have very little pain. However, the muscle twitching all over is constant, the rigidity and stiffness are worse, and I have lost muscle mass in my thighs, calves, and arms. Strangely though, my weight is steady. Every day feels a little worse, and the worsening feeling is uniform throughout all muscles (as in, not confined to a hand or foot).
As for doctors, it has been a nightmare of doctors and ER visits and bills, as I am sure many of you here are familiar with. I have seen three neurologists, an endocrinologist, two rheumatologists, and have had nearly every blood test known to man. I had an MRI of the brain that was normal, an EMG that came out clean, and all blood work looked good except for a positive ANA, elevated sed. rate, low vitamin D, and elevated cortisol levels (no surprise there!).
As for diagnoses, numerous doctors told me it was anxiety and wrote me prescriptions for Zoloft, which I refuse to take (I do take Xanax, though). One ER doctor diagnosed me with early onset Parkinson's, which was debunked a few weeks later by a neurologist. All three neurologists did not think this was ALS (however, my body behaved quite well during the appointments with very little rigidity, and I had not noticed muscle wasting yet).
Last week, a rheumatologist strongly suspected Lupus and then ordered more blood tests to be sure. The results of those tests will be available next week. He put me on a low dose of Prednisone, which does nothing but make me feel queasy.
The worsening stiffness, rigidity, and the muscle wasting are what have brought me back here. My faith in doctors is just as shaky as my muscles, so naturally I am on guard and worried.
Here are my questions this time around:
1. If the entire body seems equally affected, and notably worsens all at the same
time, could this still be ALS?
2. When my face tremors when I try to hold a smile or scrunch up my nose, or my leg
shakes if I try to hold it up for a few seconds, is the muscle fatigue the same
as weakness in ALS?
3. When I hold my hand out (like a high-five position) and slowly bend it down, is the
rigid "chink-chink-chink" an ALS symptom? (Someone mentioned in my previous post
that it could be a motor neuron thing, but I thought I'd toss the question out again).
4. What would an EMG show if I had ALS? Can a "clean" EMG be misleading?
Thank you very much for taking the time to read through all of this, and thank you again to those who replied to my last post. You helped me through a very rough patch on this frustrating, never ending quest for an answer.
- Jaime
I posted a few months back about some worrying symptoms that might indicate ALS. The following is the original post:
I'm a 29 year old woman with some worrying symptoms. I'm hoping you can help shed some light on this. Here be my (lengthy) story:
About 2 1/2 months ago, I noticed my hands were becoming rigid in their movements. I am a musician, and started noticing the rigidity when I practiced or taught violin. This rigidity soon spread to both arms, and I also began to notice it in the legs, feet, and back. It worsens every day.
The rigidity is what a previous doctor has called a "cogwheel" effect - a "chink-chink-chink" movement of the muscle rather than a fluid motion. She said she had only seen it in Parkinson's patients, but left it at that. It is very visible - I can even feel it in my back if I bend over to pick something up - chink-chink-chink. I also hear it in my breathing - a light hitching. Doing a basic neuro exam with my doctor, I can touch my nose with my finger and then his hand, but the movement is a little jerky and twitchy. While at rest, the rigid sensation is very much like when you're out in the cold and your muscles get stiff and freeze up. However, I have no tremors.
As for pain, I have on and off cramping now in my hands, and an on and off burning sensation in the tops of my feet (where you'd tie the shoe laces). That burning isn't like a muscle burn - it's literally like I'm too close to the fireplace.
I have twitching muscles everywhere, especially after I have moved that particular muscle. Any exertion makes the muscle tremble. Even smiling makes my lips/cheeks tremble.
I have read that ALS includes muscle weakness, and this is where I am confused. I am not weak in the sense of grasping or turning knobs. I can squeeze things quite tightly. I can pick up my cat, grocery bags, violin case, etc. I can even hop up the staircase (though I pay for it with burning legs). However, holding something up, such as the violin, makes the muscle burn within seconds, like I've been working out all day. That is the fatigue/weakness I have. Every movement, especially in the arms, leads to a muscle burn.
As for doctors and diagnoses - the first doctor I saw thought it was stress and that it was all in my head. Another doctor could not see the rigidity even though I could see it and clearly feel it (again, all in my head). The third placed his hand on my arm and felt the rigidity (yay - not in my head!), ordered a bunch of blood tests, and referred me to a rheumatologist, whom I have yet to see. All we know from the blood tests is that the muscles are inflamed. His preliminary diagnosis was polymyalgia rheumatica. I'm not so sure (especially as it is very, very rare in folks my age, and the symptoms don't quite fit).
So...that brings me here. What do you all think?
* * *
Since then, the burning sensation has gone and I have very little pain. However, the muscle twitching all over is constant, the rigidity and stiffness are worse, and I have lost muscle mass in my thighs, calves, and arms. Strangely though, my weight is steady. Every day feels a little worse, and the worsening feeling is uniform throughout all muscles (as in, not confined to a hand or foot).
As for doctors, it has been a nightmare of doctors and ER visits and bills, as I am sure many of you here are familiar with. I have seen three neurologists, an endocrinologist, two rheumatologists, and have had nearly every blood test known to man. I had an MRI of the brain that was normal, an EMG that came out clean, and all blood work looked good except for a positive ANA, elevated sed. rate, low vitamin D, and elevated cortisol levels (no surprise there!).
As for diagnoses, numerous doctors told me it was anxiety and wrote me prescriptions for Zoloft, which I refuse to take (I do take Xanax, though). One ER doctor diagnosed me with early onset Parkinson's, which was debunked a few weeks later by a neurologist. All three neurologists did not think this was ALS (however, my body behaved quite well during the appointments with very little rigidity, and I had not noticed muscle wasting yet).
Last week, a rheumatologist strongly suspected Lupus and then ordered more blood tests to be sure. The results of those tests will be available next week. He put me on a low dose of Prednisone, which does nothing but make me feel queasy.
The worsening stiffness, rigidity, and the muscle wasting are what have brought me back here. My faith in doctors is just as shaky as my muscles, so naturally I am on guard and worried.
Here are my questions this time around:
1. If the entire body seems equally affected, and notably worsens all at the same
time, could this still be ALS?
2. When my face tremors when I try to hold a smile or scrunch up my nose, or my leg
shakes if I try to hold it up for a few seconds, is the muscle fatigue the same
as weakness in ALS?
3. When I hold my hand out (like a high-five position) and slowly bend it down, is the
rigid "chink-chink-chink" an ALS symptom? (Someone mentioned in my previous post
that it could be a motor neuron thing, but I thought I'd toss the question out again).
4. What would an EMG show if I had ALS? Can a "clean" EMG be misleading?
Thank you very much for taking the time to read through all of this, and thank you again to those who replied to my last post. You helped me through a very rough patch on this frustrating, never ending quest for an answer.
- Jaime