I just gotta get this out there. In May of 2011 I saw a hand specialist concerning a problem I was having with my right hand. I was having problems moving my hand, not a good thing for someone who makes a living as a saw operator. The doctor concluded that the problem was radial nerve entrapment and operated on my arm to do a nerve release. After my arm healed I was sent back to work but the problem with my hand continued to worsen.
I went to my family doctor to start the process all over again. I was sent to Neurologists and Neuromuscular specialists and was given EMG/NCV tests, basically I got zapped with cattle prods for a couple of hours, definitely a test of a persons pain threshold. The preliminary diagnosis was Amyotrophic Lateral Sclerosis, ALS or Lou Gehrigs disease. After more tests including the affects of heat and cold, I had a final diagnosis of Multifocal Motor Neuropathy or MMN. MMN is considered a cousin of ALS but it's not fatal and I'll still be able to swallow and breathe but I'll probably lose the ability to walk, feed myself or wipe my own butt. It's manageable with an intravenous treatment with a human blood product called Immunoglobulin or IVIG. The treatment doesn't cure the condition, only slows the degredation a little. Hydro and physical therapy help to reduce muscular atrophy but we can't afford to go to a facility so we do what we can at home.
The biggest problem I'm having now is that before all these problems started the wife and I were both gainfully employed and we had just replaced our old car and truck with newer models and we still have a mortgage. I am glad I listened to my wife and got both short and long term disability through my job while I hoped for some kind of a miracle cure but no miracle occured and I continue to worsen.
Now my right hand is almost completely useless, my right lower leg and foot no longer operate properly, I have difficulty lifting my left leg and tests have shown that the nerve conduction velocity in my left hand and arm is degrading. My wife is no longer employed because she has to babysit me now and I'm on Federal Disability. It's not enough to pay the bills and our savings are dwindling. We've been having to cash in our CD accounts and other accounts we were setting aside toward our retirement. Our vehicles aren't anything fancy just a used base model Toyota Yaris which was my wife's car and a used base model Toyota Tacoma 4 cylinder, 4wd truck. Sometimes, the only way to get down out of the mountains is with a 4wd truck.
When it comes down to it we'll probably sell the truck first because the Yaris gets better gas mileage and until August my IVIG treatments are covered by my insurance company and after that I'm on my own until medicare kicks in after a couple of years.
I gotta admit that I'm somewhat apprehensive about what the future holds and sometimes feel like it's useless to continue going on. My condition is incurable and hopeless as is our financial situation. This forum helps as a distaction, there's lotsa interesting people with lotsa knowledge here.
I went to my family doctor to start the process all over again. I was sent to Neurologists and Neuromuscular specialists and was given EMG/NCV tests, basically I got zapped with cattle prods for a couple of hours, definitely a test of a persons pain threshold. The preliminary diagnosis was Amyotrophic Lateral Sclerosis, ALS or Lou Gehrigs disease. After more tests including the affects of heat and cold, I had a final diagnosis of Multifocal Motor Neuropathy or MMN. MMN is considered a cousin of ALS but it's not fatal and I'll still be able to swallow and breathe but I'll probably lose the ability to walk, feed myself or wipe my own butt. It's manageable with an intravenous treatment with a human blood product called Immunoglobulin or IVIG. The treatment doesn't cure the condition, only slows the degredation a little. Hydro and physical therapy help to reduce muscular atrophy but we can't afford to go to a facility so we do what we can at home.
The biggest problem I'm having now is that before all these problems started the wife and I were both gainfully employed and we had just replaced our old car and truck with newer models and we still have a mortgage. I am glad I listened to my wife and got both short and long term disability through my job while I hoped for some kind of a miracle cure but no miracle occured and I continue to worsen.
Now my right hand is almost completely useless, my right lower leg and foot no longer operate properly, I have difficulty lifting my left leg and tests have shown that the nerve conduction velocity in my left hand and arm is degrading. My wife is no longer employed because she has to babysit me now and I'm on Federal Disability. It's not enough to pay the bills and our savings are dwindling. We've been having to cash in our CD accounts and other accounts we were setting aside toward our retirement. Our vehicles aren't anything fancy just a used base model Toyota Yaris which was my wife's car and a used base model Toyota Tacoma 4 cylinder, 4wd truck. Sometimes, the only way to get down out of the mountains is with a 4wd truck.
When it comes down to it we'll probably sell the truck first because the Yaris gets better gas mileage and until August my IVIG treatments are covered by my insurance company and after that I'm on my own until medicare kicks in after a couple of years.
I gotta admit that I'm somewhat apprehensive about what the future holds and sometimes feel like it's useless to continue going on. My condition is incurable and hopeless as is our financial situation. This forum helps as a distaction, there's lotsa interesting people with lotsa knowledge here.
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