DaveB
New member
- Joined
- Jul 27, 2009
- Messages
- 4
- Reason
- Learn about ALS
- Country
- US
- State
- South Dakota
- City
- SW SD
For me it all started last February after a gallbladder surgery. I went home to heal up and started getting out and about a few days later. Then some weird stuff started happening. I would wake up at night with burning sensations in my shoulders and back. It would wake me up like clockwork at around 2:00 am, then no more sleep for the night. I had trouble eating because of stomach problems after the gallbladder removal and lost around 35 lbs.
I went up to Mayo Clinic and they did a bunch of tests. Chest and CT scans, scope down my throat, hoards of blood tests, everything negative. They told me I had irritable bowel of all things.
I went home and continued to have problems. I began having numbness in my arms, legs, shoulders, feet, etc. I went back to Mayo in April. They had me see the neurology department, a guy that specialized in small fiber neuropathy. He told me that my neruo exam was pristine. He had a neck MRI done, blood work, an EMG, and a sweat test performed. All normal. He told me that he didn't know what was causing my troubles. They had me see a physical medicine guy who prescribed an exercise program. Also they wanted me on a medication for anxiety. Anxiety I said, you'd be anxious too if you felt like I do...
So, I come home, start the exercise program. My family Dr prescribes an anti-depressant for anxiety. A couple weeks later I start to notice lots of twitching in my feet and calves. I read about SSRI's and find that they can cause this twitching. So I go off the medication and visit my GP. He draws blood to see if electrolytes could be causing the fasciculations. My vitamin D was low, so he puts me on a supplement. My D comes up. But the twitches stay around. The wax and wane, but are really focused in my left arch, causing my big toe to move around. I read on the internets about the possible causes, and I panic about ALS... I start to check myself over and notice that my left calf is skinny. It's about 1.25 inches smaller than my right. This is only weeks after having a clean EMG at Mayo Clinic, so I tell myself, well, you're right handed so you favor your left.
I start to do lots of walking and toe raises to try and strengthen the left calf. All I get is lots of stiffness and soreness, lots of fatigue. No increase in muscle. I also notice that my toes are skinnier and weaker on the left. I have lots of pain and burning in the left foot and toes and can barely wear shoes it is so uncomfortable.
So, I get back in touch with Mayo in September. They set my up with a physical medicine guy who specializes in spinal issues. He examines me and doesn't think it's a spinal injury. Yes, your left is smaller than your right he says. Most likely from an old injury. He could do MRI's but I didn't think it will be productive.
Winter comes. I try and go out pheasant hunting. The walking just kills my left foot with pain after lots of walking. It feels like I'm walking on bones, like there is no more padding in the sole of my feet. My left calf is really fatigued. My toes feel wet and like they are bleeding when I walk a lot. So I go back to my GP. He does more blood work to check electrolytes. No that's not causing the twitching it turns out. So he schedules me for a visit to a local neurologist. He would like an MRI of the brain but says the insurance will argue with him, just wait on the neurologist to order it he says. He is concerned about LMN involvement he says, scaring the heck out of me again. He also brings up BFS and MS.
Today I think I realized why my toes hurt on the left foot. I noticed that when I'm standing the toes buckle at the distal joint. I think they are weak and fatigued. They are definitely not as strong as the ones on my right foot. Also the bones stick out a lot more on the left foot than the right.
I was so encouraged by the clean EMG last April at Mayo, but here I go again. A visit with a neurologist on Dec. 2nd. What a treat.
Anyway, believe it or not, that's my abbreviated story. I am most worried for my wife and 10 year old daughter.
I went up to Mayo Clinic and they did a bunch of tests. Chest and CT scans, scope down my throat, hoards of blood tests, everything negative. They told me I had irritable bowel of all things.
I went home and continued to have problems. I began having numbness in my arms, legs, shoulders, feet, etc. I went back to Mayo in April. They had me see the neurology department, a guy that specialized in small fiber neuropathy. He told me that my neruo exam was pristine. He had a neck MRI done, blood work, an EMG, and a sweat test performed. All normal. He told me that he didn't know what was causing my troubles. They had me see a physical medicine guy who prescribed an exercise program. Also they wanted me on a medication for anxiety. Anxiety I said, you'd be anxious too if you felt like I do...
So, I come home, start the exercise program. My family Dr prescribes an anti-depressant for anxiety. A couple weeks later I start to notice lots of twitching in my feet and calves. I read about SSRI's and find that they can cause this twitching. So I go off the medication and visit my GP. He draws blood to see if electrolytes could be causing the fasciculations. My vitamin D was low, so he puts me on a supplement. My D comes up. But the twitches stay around. The wax and wane, but are really focused in my left arch, causing my big toe to move around. I read on the internets about the possible causes, and I panic about ALS... I start to check myself over and notice that my left calf is skinny. It's about 1.25 inches smaller than my right. This is only weeks after having a clean EMG at Mayo Clinic, so I tell myself, well, you're right handed so you favor your left.
I start to do lots of walking and toe raises to try and strengthen the left calf. All I get is lots of stiffness and soreness, lots of fatigue. No increase in muscle. I also notice that my toes are skinnier and weaker on the left. I have lots of pain and burning in the left foot and toes and can barely wear shoes it is so uncomfortable.
So, I get back in touch with Mayo in September. They set my up with a physical medicine guy who specializes in spinal issues. He examines me and doesn't think it's a spinal injury. Yes, your left is smaller than your right he says. Most likely from an old injury. He could do MRI's but I didn't think it will be productive.
Winter comes. I try and go out pheasant hunting. The walking just kills my left foot with pain after lots of walking. It feels like I'm walking on bones, like there is no more padding in the sole of my feet. My left calf is really fatigued. My toes feel wet and like they are bleeding when I walk a lot. So I go back to my GP. He does more blood work to check electrolytes. No that's not causing the twitching it turns out. So he schedules me for a visit to a local neurologist. He would like an MRI of the brain but says the insurance will argue with him, just wait on the neurologist to order it he says. He is concerned about LMN involvement he says, scaring the heck out of me again. He also brings up BFS and MS.
Today I think I realized why my toes hurt on the left foot. I noticed that when I'm standing the toes buckle at the distal joint. I think they are weak and fatigued. They are definitely not as strong as the ones on my right foot. Also the bones stick out a lot more on the left foot than the right.
I was so encouraged by the clean EMG last April at Mayo, but here I go again. A visit with a neurologist on Dec. 2nd. What a treat.
Anyway, believe it or not, that's my abbreviated story. I am most worried for my wife and 10 year old daughter.