jaws
Active member
- Joined
- Feb 16, 2011
- Messages
- 40
- Reason
- PALS
- Diagnosis
- 03/2011
- Country
- US
- State
- PA
- City
- Harrisburg
Hi,
I've been lurking for some time, and set up an account last month. Though I'd hoped to be able to leave this forum as a scary side note in my life, as of this morning, that's unfortunately not an option for me. :sad:
Backing up a bit: last summer, I found myself unable to clip my nails. Within a couple of months, my right arm strength had deteriorated considerably. I went to a chiropractor, who said I had a pinched nerve, though he found it odd that there was no sensory loss present. After two months of ineffectual adjustments and exercises, I moved on to an orthopedist, who noticed that my left arm was also weak. He ordered x-rays, nothing of course. Then an MRI, which showed a very small syrinx at c5-c6. After a bit of a wild-goose chase and scare, ended up at a neurosurgeon, who said it was smaller than a pimple, and based on size and location, could not possibly cause my symptoms. After a few minutes of reflex & strength tests, he said, quote, I think you have motor neuron disease. I hope to God I'm wrong, but I don't think I am, unquote.
Excellent bedside manners. After a quick check on Wikipedia, begin the real scare and major disruptions in our lives.
He sent me on to a neurologist, who found, on top of my other sypmtoms, quick reflexes in my leg and spasticity in my ankle. He ordered 9 blood tests one week, and another 13 vials the next. Everything (CK levels, B12, Lymes, HIV, etc.) came back negative. Then came the EMG and spinal tap. Nothing in the spinal tap (more Lymes, West Nile, various genetic stuff, etc., all clean). Nerve conduction normal, but fibrillations throughout my arms and legs. He was unwilling at the time to make a determination, and sent me on to the ALS clinic for that dirty job.
Which brings me to now. This doctor said it's definitely ALS/MND. So now I'm in the stupid club.
And yes, I've asked about, and they've shot down, everything else: Kennedy's, MS, MD, Lymes, Meningitis, PMA. Though I did today bring up MMN: though he doesn't think it's that, because of the nerve conduction, but did order an Anti-GM1 test. (Who knows, maybe in two weeks I'll be reporting it was all a big mistake...)
He's prescribed Riluzole and the ongoing blood work that goes along with that. He's hopeful, as I'm a male in my 40s with no bulbar signs, just in the limbs, but said that a better prognosis won't be possible until a few months down the road. He wants me to take 600mg of CoQ10 (which we've priced at $120/month; I'd like to find out how to make it myself, if anyone has any idea), and continue my other supplements: Vitamin E at 400mg, Magnesium Citrate 600mg, Vitamin C up'd to 2000mg. Also 10mg of Creatine (to build up my muscles a bit, hopefully), and 25,000 units of Beta Carotene.
I'm also continuing QiGong classes and started up a membership at the Y to use their pool and some moderate gym work.
In general, though I'm obviously mad and sad, I'm also hopeful and happy to be alive. You know how it goes.
- jaws
I've been lurking for some time, and set up an account last month. Though I'd hoped to be able to leave this forum as a scary side note in my life, as of this morning, that's unfortunately not an option for me. :sad:
Backing up a bit: last summer, I found myself unable to clip my nails. Within a couple of months, my right arm strength had deteriorated considerably. I went to a chiropractor, who said I had a pinched nerve, though he found it odd that there was no sensory loss present. After two months of ineffectual adjustments and exercises, I moved on to an orthopedist, who noticed that my left arm was also weak. He ordered x-rays, nothing of course. Then an MRI, which showed a very small syrinx at c5-c6. After a bit of a wild-goose chase and scare, ended up at a neurosurgeon, who said it was smaller than a pimple, and based on size and location, could not possibly cause my symptoms. After a few minutes of reflex & strength tests, he said, quote, I think you have motor neuron disease. I hope to God I'm wrong, but I don't think I am, unquote.
Excellent bedside manners. After a quick check on Wikipedia, begin the real scare and major disruptions in our lives.
He sent me on to a neurologist, who found, on top of my other sypmtoms, quick reflexes in my leg and spasticity in my ankle. He ordered 9 blood tests one week, and another 13 vials the next. Everything (CK levels, B12, Lymes, HIV, etc.) came back negative. Then came the EMG and spinal tap. Nothing in the spinal tap (more Lymes, West Nile, various genetic stuff, etc., all clean). Nerve conduction normal, but fibrillations throughout my arms and legs. He was unwilling at the time to make a determination, and sent me on to the ALS clinic for that dirty job.
Which brings me to now. This doctor said it's definitely ALS/MND. So now I'm in the stupid club.
And yes, I've asked about, and they've shot down, everything else: Kennedy's, MS, MD, Lymes, Meningitis, PMA. Though I did today bring up MMN: though he doesn't think it's that, because of the nerve conduction, but did order an Anti-GM1 test. (Who knows, maybe in two weeks I'll be reporting it was all a big mistake...)
He's prescribed Riluzole and the ongoing blood work that goes along with that. He's hopeful, as I'm a male in my 40s with no bulbar signs, just in the limbs, but said that a better prognosis won't be possible until a few months down the road. He wants me to take 600mg of CoQ10 (which we've priced at $120/month; I'd like to find out how to make it myself, if anyone has any idea), and continue my other supplements: Vitamin E at 400mg, Magnesium Citrate 600mg, Vitamin C up'd to 2000mg. Also 10mg of Creatine (to build up my muscles a bit, hopefully), and 25,000 units of Beta Carotene.
I'm also continuing QiGong classes and started up a membership at the Y to use their pool and some moderate gym work.
In general, though I'm obviously mad and sad, I'm also hopeful and happy to be alive. You know how it goes.
- jaws