prometheus
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- Feb 28, 2008
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I think I may be having some communication issues with my neurologist and I am hoping for some ideas on how to communicate with him. I am also hoping to see what your thoughts are on my symptoms. I may need to seek a new neuro.
My symptoms started in mid October as weakness and spasticity. I saw a MD and by the end of October I had my first neurology appointment. At my first appointment, my MD said that it was possibly MS. He also mentioned PLS and possibly ALS (only upper motor neuron signs so far). In addition to my symptoms, my MD documented that I had a very slight essential tremor and numbness in my right arm. However, these were shown to be unrelated through a series of tests.
The tremor only manifests itself if I've had coffee or if I've been lifting with my arm. The "tremor" was in my weak arm. This makes me think that it is not an essential tremor, but that it is related to my caffeine consumption or weakness. If I do not drink coffee in the morning and am careful to only lift my kids with my strong arm, the tremor is non-existent at my neuro appointment.
The numbness in my arm is another symptom that I think may be unrelated. After my spinal MRI, my neurologist said that I had some thinning on a vertebrae on my spine, and that it would cause numbness in my arm.
At first he was thinking MS or something to do with the motor neuron, specifically upper motor neuron. In addition to my weakness, spasticity and poor balance, I also had a positive Babinski and positive Romberg sign. However, since the MRI and LP came back normal, he said that he has ruled out MS (I think a bit hasty but I’m not the expert). He said that he didn’t know what was going on because my symptoms were coming and going. However, the only one that was “coming and going” was the tremor, and this was dependant on whether I had caffeine or overworked my weak arm. My spasticity, weakness and balance have not disappeared and have only become worse in the four months since my onset. I am now to the point where I cannot walk without assistance and am having painful leg and back spasms.
At my last appointment, he said that he is ruling out MNDs because of the way that the tremor comes and goes, and because tremors and numbness are not signs of MND. Don’t get me wrong, I don’t want it to be ALS or PLS, but if it is I want to know. So now he is saying it may be early Parkinson’s because PD won’t show up on the MRI and LP. He also said that his money is on it being something called multiple system atrophy because it would be Parkinson’s plus whatever is causing the babinksi, Romberg and numbness.
I don’t want to be argumentative with him, but he doesn’t seem to be listening when I remind him of the thinning vertebrae causing the numbness (his very own words) and the tremor being related to caffeine and/or weakness.
Any thoughts? Suggestions? Could this fit into the MND disease category? How should I approach my neurologist with my concerns?
My symptoms started in mid October as weakness and spasticity. I saw a MD and by the end of October I had my first neurology appointment. At my first appointment, my MD said that it was possibly MS. He also mentioned PLS and possibly ALS (only upper motor neuron signs so far). In addition to my symptoms, my MD documented that I had a very slight essential tremor and numbness in my right arm. However, these were shown to be unrelated through a series of tests.
The tremor only manifests itself if I've had coffee or if I've been lifting with my arm. The "tremor" was in my weak arm. This makes me think that it is not an essential tremor, but that it is related to my caffeine consumption or weakness. If I do not drink coffee in the morning and am careful to only lift my kids with my strong arm, the tremor is non-existent at my neuro appointment.
The numbness in my arm is another symptom that I think may be unrelated. After my spinal MRI, my neurologist said that I had some thinning on a vertebrae on my spine, and that it would cause numbness in my arm.
At first he was thinking MS or something to do with the motor neuron, specifically upper motor neuron. In addition to my weakness, spasticity and poor balance, I also had a positive Babinski and positive Romberg sign. However, since the MRI and LP came back normal, he said that he has ruled out MS (I think a bit hasty but I’m not the expert). He said that he didn’t know what was going on because my symptoms were coming and going. However, the only one that was “coming and going” was the tremor, and this was dependant on whether I had caffeine or overworked my weak arm. My spasticity, weakness and balance have not disappeared and have only become worse in the four months since my onset. I am now to the point where I cannot walk without assistance and am having painful leg and back spasms.
At my last appointment, he said that he is ruling out MNDs because of the way that the tremor comes and goes, and because tremors and numbness are not signs of MND. Don’t get me wrong, I don’t want it to be ALS or PLS, but if it is I want to know. So now he is saying it may be early Parkinson’s because PD won’t show up on the MRI and LP. He also said that his money is on it being something called multiple system atrophy because it would be Parkinson’s plus whatever is causing the babinksi, Romberg and numbness.
I don’t want to be argumentative with him, but he doesn’t seem to be listening when I remind him of the thinning vertebrae causing the numbness (his very own words) and the tremor being related to caffeine and/or weakness.
Any thoughts? Suggestions? Could this fit into the MND disease category? How should I approach my neurologist with my concerns?