I've had neurological symptoms for many (at least five - maybe 7 or 8) years now, particularly paresthesia (which started in my left fingers/hand and foot/toes, but now has spread to the left side of my face and parts of my torso) and trouble with balance and coordination. After maybe two years of testing and monitoring by a neurologist who thought that I probably had early MS, and kept expecting lesions to show on my brain MRI, my PCP (who shared my frustration with the neuro's focus on the brain only) ordered a spine MRI, which showed a small cervical syrinx. From that time, I got a second opinion from a neurosurgeon at the Cleveland Clinic, and even joined a research study at NIH in Bethesda on the natural history of syringomyelia.
But over the past couple years, I have been adding new symptoms. Last year, my local neurologist diagnosed me with Essential Tremor. The tremor, which is, like the paresthesia, much worse on the left side, has continued to get worse since. Caffeine does not seem to make it worse, and the first line of treatment (Clonazepam) didn't touch it. Although I've had trouble finding words off and on for the past couple years, over the past few months, I seem to be having some other cognitive difficulties, which is making simple work tasks more challenging sometimes.
A couple weeks ago, I saw my PCP for a regular yearly exam. I expected him to be thrilled with my weight loss and general improvement in health over the previous year. Instead, he expressed concern over my worsened neurological condition, and asked whether my neurologist had re-examined the possibility that I have MS as well as syringomyelia. This past Wednesday, I saw my neurologist (who I had just seen about three months ago), who felt that my symptoms had progressed significantly just in the time since I'd last seen him. My reflexes were of particular concern to him. I recall neuros in my syringomyelia exams noting that I had "brisk reflexes." But on Wednesday, the dr. said that I had "hyperreflexia," and he showed me clonus in both my ankles - much worse on one side. He also showed how, when he very gently tapped near my ankle, the muscles reacted all the way up to my thigh.
So now his office is scheduling me for blood tests and a new brain and spine MRI (I'm not sure how far down the spine), referring me to a new urologist to determine whether the increased urinary incontinence (another joyful symptom) is due to "spastic bladder" or something else, and then he will see me when all these results are in, and determine "which direction we should go next."
Does my story sound familiar to any of you? Are these the sort of symptoms you had at first, and does my progression seem like what anybody else has experienced?
I also have trouble with my vision - yes, I've seen an optometrist, and he referred me to an opthamologist specializing in retinal issues, but I haven't been. And intermittent pain. And heat is not my friend. I was out in 100 degree humid weather yesterday and felt like I had been drugged!
Thanks for letting me vent.
But over the past couple years, I have been adding new symptoms. Last year, my local neurologist diagnosed me with Essential Tremor. The tremor, which is, like the paresthesia, much worse on the left side, has continued to get worse since. Caffeine does not seem to make it worse, and the first line of treatment (Clonazepam) didn't touch it. Although I've had trouble finding words off and on for the past couple years, over the past few months, I seem to be having some other cognitive difficulties, which is making simple work tasks more challenging sometimes.
A couple weeks ago, I saw my PCP for a regular yearly exam. I expected him to be thrilled with my weight loss and general improvement in health over the previous year. Instead, he expressed concern over my worsened neurological condition, and asked whether my neurologist had re-examined the possibility that I have MS as well as syringomyelia. This past Wednesday, I saw my neurologist (who I had just seen about three months ago), who felt that my symptoms had progressed significantly just in the time since I'd last seen him. My reflexes were of particular concern to him. I recall neuros in my syringomyelia exams noting that I had "brisk reflexes." But on Wednesday, the dr. said that I had "hyperreflexia," and he showed me clonus in both my ankles - much worse on one side. He also showed how, when he very gently tapped near my ankle, the muscles reacted all the way up to my thigh.
So now his office is scheduling me for blood tests and a new brain and spine MRI (I'm not sure how far down the spine), referring me to a new urologist to determine whether the increased urinary incontinence (another joyful symptom) is due to "spastic bladder" or something else, and then he will see me when all these results are in, and determine "which direction we should go next."
Does my story sound familiar to any of you? Are these the sort of symptoms you had at first, and does my progression seem like what anybody else has experienced?
I also have trouble with my vision - yes, I've seen an optometrist, and he referred me to an opthamologist specializing in retinal issues, but I haven't been. And intermittent pain. And heat is not my friend. I was out in 100 degree humid weather yesterday and felt like I had been drugged!
Thanks for letting me vent.
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