Jaime K.
Member
- Joined
- Oct 18, 2009
- Messages
- 18
- Reason
- Learn about ALS
- Country
- US
- State
- NY
- City
- Etna
Hi everyone,
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?
Thanks for taking the time to read all this. I'm pretty frightened and just wish to know what on earth is going on.
- Jaime
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?
Thanks for taking the time to read all this. I'm pretty frightened and just wish to know what on earth is going on.
- Jaime