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NEECE10-72

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Apr 21, 2011
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Learn about ALS
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State
Tx
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Sulphur Springs
Hope you friends can help me out. Im a 43 year old male. A year and a half ago, I was at a gym on a treadmill when my left foot quit trying to work. It was like I was having to tell it to lift up and put down. Didnt think much about it so in about 2 months I was walking and the same thing occurd. Left leg and foot felt funny. Kind of like I was dragging it. I went to my MD and he said I need to see a neurologist asap. I went here locally and he told me that I had weakness in those two limbs and was experiencing symptoms of MS. I had the EMG, the MRI of my brain, and the muscle velocity test. All came up good. I was so glad that I thought I could handle it and didnt worry anymore. Symptoms grew to the coordination in my left arm so everyone said you have a nerve problem. I went to a chiropractor. Thought he helped but nope. Had worse funny feeling in my left foot, leg, and arm. Went back to my MD who refered me to a great Neuroligist group in Texas. I met with my first doctor and he performed 2 more MRI'S that came back clean, another MRG (clean), another velocity test (good), a muscle biopsy on my thigh, and a lumbar stick. Went back for results 3 weeks later and spinal results were clean but muscle biopsy was showing degradation signs. He was going to diagnose me with either ALS or PLS. Man, my wife and I were sick to our stomachs. In his defense, he did say before I diagnose you, I want you to get a second opinion. I then met with the expert of the ALS clinic. He did more in office test. Looked over all of my other test and said," I dont see it." Best news I had heard in 2 years. He said it was something going on but not sure yet. He told me to come back in 3 months for another EMG and velocity test. I still have the weakness in my left leg and coordination problems in my left hand. I also have muscle twitches in my body ranging from bottom of feet, thighs, eyelids, arms, etc. I can talk, swallow, etc. just fine.
Hard to be completely good when one dr says yes and the 2nd yes i dont think so.
You guys ever experience anything like this?
 
Well my husband sort of went through something similar, and in the end had CIDP--MADSAM. He saw a neurologist for two years who had good reputation who said the tests showed "not much". Husband had no pincher grip and had weakness in the rt. arm. After repeated EMG and Nerve Conduction tests over a 2-3 year period, the same neurologist said it was Carpal Tunnel, hubby had two nerve releases done, and deteriorated further. Finally he got referred to a neurologist at a neuromuscular disorder clinic. She repeated EMG and nerve conduction tests (did all four limbs versus the first guy who did the affected arm only), did lumbar puncture which showed minor elevation in protein, did MRI and a sensory motor panel from Athena Labs in the States. Within a month, he was told he had CIDP--MADSAM but along route in had a query of ALS. Started IVIG in 2007 and has done okay on it. Slow deterioration of the past 4 years but it stopped the major atrophy that was happening.
Laurel
 
I'd be inclined to follow the recommendations of the ALS specialist. They're experts in this disease. Other neuro might see a case or two.

There are about 30k people with ALS at any one time. So, with a phone book full of neuros--it's unlikely that the general neuro will have treated more than maybe one person with this disease--while the ALS specialist probably sees nothing else.
 
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