Moonmark
Distinguished member
- Joined
- May 6, 2009
- Messages
- 268
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- Other
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- US
- State
- New England
- City
- someplace
Hi, again,
I went back to the neurologist today to go over all the test results. As I reported earlier, both the EMG and NCV tests were normal, which, he said, indicates that I do not have ALS, peripheral neuropathy, radiculopathy, or a myopathy. When I asked him for greater clarification about ALS, he said that the symptoms I am having and the EMG results indicate that I "do not have ALS at this time." he said it does not mean that I could not possibly develop it "down the road" but said I do not have it at this time. what the heck does that mean?! are they required to say that or something?
My CK level was normal, as was the cervical spine MRI and the evoked potential test. The brain MRI shows several small white matter hyperintensities, which the radiologist indicated on his report could be indicative of MS, vasculitis, Lyme disease, drug toxicity, or other conditions. The neuro does not believe those lesions are consistent with MS and declined to order a lumbar puncture. He said there is a slight swelling of my left optic nerve, but is not sure whether that is just a normal anatomical variation for me. He also does not want to do a muscle biopsy because the CK level was not elevated and said he does not think a full spine MRI is necessary. He does not want to do any more testing at this time, but said he wants to do "watchful waiting" and have me return if symptoms worsen, and in any event, in 6 months. When I asked him about what appears to be atrophy in my hand/wrist area, he said he does not know what my limbs looked like previously, but agreed they are thin in comparison to other parts of my body. He did the pushing-pulling tests and said he does not think I am"pathologically" weak. (I can't hold a pen for the duration of an interview-- I am a freelance reporter/writer, but what the heck?) Basically, he said "it is possible" that I have a neurological disorder, but he cannot determine what it is at this time and said many diseases need to worsen before they can become more apparent. he said it is also possible that I had a virus that affected my nervous system.
Meanwhile, over the holiday weekend, I was unable to take a walk on the beach. I tried, but could not get very far before my right leg and hip weakened and I had pain running down the leg. I also have developed some kind of blocked ear thing in the left ear and when I swallow and my ear makes popping and crunching sounds. not sure if this is related to any of the other symptoms I have had, which I will not trouble you with by repeating.
just wondering: where would you go from here? another doctor? a different kind of doctor? wait to see if things get worse or better? I am thrilled to hear that this is not ALS, but very disappointed to have no explanation for my muscle weakness and other problems.
thanks--
Sandra
I went back to the neurologist today to go over all the test results. As I reported earlier, both the EMG and NCV tests were normal, which, he said, indicates that I do not have ALS, peripheral neuropathy, radiculopathy, or a myopathy. When I asked him for greater clarification about ALS, he said that the symptoms I am having and the EMG results indicate that I "do not have ALS at this time." he said it does not mean that I could not possibly develop it "down the road" but said I do not have it at this time. what the heck does that mean?! are they required to say that or something?
My CK level was normal, as was the cervical spine MRI and the evoked potential test. The brain MRI shows several small white matter hyperintensities, which the radiologist indicated on his report could be indicative of MS, vasculitis, Lyme disease, drug toxicity, or other conditions. The neuro does not believe those lesions are consistent with MS and declined to order a lumbar puncture. He said there is a slight swelling of my left optic nerve, but is not sure whether that is just a normal anatomical variation for me. He also does not want to do a muscle biopsy because the CK level was not elevated and said he does not think a full spine MRI is necessary. He does not want to do any more testing at this time, but said he wants to do "watchful waiting" and have me return if symptoms worsen, and in any event, in 6 months. When I asked him about what appears to be atrophy in my hand/wrist area, he said he does not know what my limbs looked like previously, but agreed they are thin in comparison to other parts of my body. He did the pushing-pulling tests and said he does not think I am"pathologically" weak. (I can't hold a pen for the duration of an interview-- I am a freelance reporter/writer, but what the heck?) Basically, he said "it is possible" that I have a neurological disorder, but he cannot determine what it is at this time and said many diseases need to worsen before they can become more apparent. he said it is also possible that I had a virus that affected my nervous system.
Meanwhile, over the holiday weekend, I was unable to take a walk on the beach. I tried, but could not get very far before my right leg and hip weakened and I had pain running down the leg. I also have developed some kind of blocked ear thing in the left ear and when I swallow and my ear makes popping and crunching sounds. not sure if this is related to any of the other symptoms I have had, which I will not trouble you with by repeating.
just wondering: where would you go from here? another doctor? a different kind of doctor? wait to see if things get worse or better? I am thrilled to hear that this is not ALS, but very disappointed to have no explanation for my muscle weakness and other problems.
thanks--
Sandra