Glenn1970
New member
- Joined
- Nov 1, 2017
- Messages
- 2
- Reason
- DX MND
- Diagnosis
- 06/2007
- Country
- US
- State
- TN
- City
- Knoxville
Hi everybody
I was diagnosed with motor neuron disease about ten years ago, and since, I’ve been told I don’t have motor neuron disease, and I’ve also been told that I may have a neuropathy, or some form of limb girdle muscular dystrophy.
I’ll try to make this pithy, but it’s a long story, if anyone needs additional info I’ll be glad to provide what I can, ive attached three pictures of some findings in some tests I’ve taken, I have more if needed.
I’ve done a lumbar puncture, came up clean, multiple EMG’s, came up dirty, hands, shoulders, legs, and hips. I’ve had a muscle biopsy, with a picture of the results attached. I’ve had breathing tests with a picture attached, I’ve had a complete genome test, with the results attached. Yet, 15 years later I still have no difinitive diagnosis.
I have a essential tremor. I take ropinirole for that. I have sensory issues, in my arms and legs. I thankfully still have no bulbar involvement. I have a positive babinski on both sides! Kinda weird. My knees are slowly spreading apart, I think from my hip problems, I’m not sure, my knees can only get within a foot of each other, which makes sitting difficult. I can’t run or jump or stand on my heels, I can’t stand with my eyes closed.
If I walk more than I should, 15 minutes max a day, my thigh muscles will hurt so bad I won’t be able to walk for days. I fall about once a month, can’t do steps up or down, can’t button a shirt, can’t write, can’t hold a phone to my ear. I have no reflexes. I’m sure there’s more, but you get the gist.
Ok what is it, lol. My copper level runs about 40-50 which is low, my creatine kinase runs at about 400-500, which is slightly high. I have high liver enzymes, and a fatty liver and pancreas. I have a persistent dry cough, I don’t smoke, I have some slight scarring on my lungs, and have been diagnosed with ILD. Other than that, I’m ok, lol.
Anyway, if anybody has ever seen anything like this, please let me know your thoughts. Obviously I’ve taken every test known to man in the last 15 years, but who knows, maybe we missed something. Thanks again, sorry it’s so much.
Edit: I used to have muscle twitches but they don’t happen anymore, they only did it for about 7 or 8 years, I still have cramping though, I take vitamin E for those, oh yea, and I’m 48 years old, first symptom when I was 33 was in my legs, I felt like Herman Munster, all stiff, and a bit weak
I was diagnosed with motor neuron disease about ten years ago, and since, I’ve been told I don’t have motor neuron disease, and I’ve also been told that I may have a neuropathy, or some form of limb girdle muscular dystrophy.
I’ll try to make this pithy, but it’s a long story, if anyone needs additional info I’ll be glad to provide what I can, ive attached three pictures of some findings in some tests I’ve taken, I have more if needed.
I’ve done a lumbar puncture, came up clean, multiple EMG’s, came up dirty, hands, shoulders, legs, and hips. I’ve had a muscle biopsy, with a picture of the results attached. I’ve had breathing tests with a picture attached, I’ve had a complete genome test, with the results attached. Yet, 15 years later I still have no difinitive diagnosis.
I have a essential tremor. I take ropinirole for that. I have sensory issues, in my arms and legs. I thankfully still have no bulbar involvement. I have a positive babinski on both sides! Kinda weird. My knees are slowly spreading apart, I think from my hip problems, I’m not sure, my knees can only get within a foot of each other, which makes sitting difficult. I can’t run or jump or stand on my heels, I can’t stand with my eyes closed.
If I walk more than I should, 15 minutes max a day, my thigh muscles will hurt so bad I won’t be able to walk for days. I fall about once a month, can’t do steps up or down, can’t button a shirt, can’t write, can’t hold a phone to my ear. I have no reflexes. I’m sure there’s more, but you get the gist.
Ok what is it, lol. My copper level runs about 40-50 which is low, my creatine kinase runs at about 400-500, which is slightly high. I have high liver enzymes, and a fatty liver and pancreas. I have a persistent dry cough, I don’t smoke, I have some slight scarring on my lungs, and have been diagnosed with ILD. Other than that, I’m ok, lol.
Anyway, if anybody has ever seen anything like this, please let me know your thoughts. Obviously I’ve taken every test known to man in the last 15 years, but who knows, maybe we missed something. Thanks again, sorry it’s so much.
Edit: I used to have muscle twitches but they don’t happen anymore, they only did it for about 7 or 8 years, I still have cramping though, I take vitamin E for those, oh yea, and I’m 48 years old, first symptom when I was 33 was in my legs, I felt like Herman Munster, all stiff, and a bit weak
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