andirai
Active member
- Joined
- Jun 22, 2017
- Messages
- 33
- Reason
- PALS
- Diagnosis
- 08/2017
- Country
- US
- State
- Tennessee
- City
- Clarksville
Good afternoon,
I am one of a thousand people who visit the internet in search of answers that are not readily available from a neurologist. It is a frustrating process that drives us to chat rooms such as these seeking reassurance or answers and I am grateful for any input that is provided. So….
About a two years ago I started noticing small changes in my body, more specifically, my legs. I went bowling and each time I tried to throw the ball, I fell. I also fell a few times doing routine things and noticed that walking downstairs was very difficult.
I went to the doctor and they said I was overweight and needed to exercise. About a year ago I fell off my bike. I cannot even say what happened exactly, I was stopping and put my leg out and then I was just on the ground. I noticed that I could not run and sadly, I could no longer dance. I tell my legs to bounce to the rhythm and it just does not happen.
In October of 2016, after an examination of my walking and balance, my PCP sent me to a neurologist. The neurologist noted hyperreflexia and suggested I might have MS. An MRI of my spine and brain was conducted and there were no lesions present. The neurologist said an EMG could be performed but he did not think it would show anything. I was very frustrated because at this point I walked like Frankenstein if he were a toddler! I did not have insurance so I just suffered in silence.
In March of 2017 I became insured and started seeing a new neurologist. He performed an EMG on my legs that was positive for damage. He also noted the muscle weakness, hyperreflexia, clonus and spasticity in my legs. He ordered an MRI on my lumbar, cervical and thoracic spine. The results indicated some mild damage to my spinal cord but I am 48 so it is most likely age related. I also had a spinal tap that showed some of my muscle enzymes were up. I also have myelin basic protein in my spinal fluid indicating a breakdown of myelin in the nervous system. My SED rate was 25 so there is inflammation in my body somewhere.
He performed about $10,000 worth of blood work and it only showed that my thyroid was a bit low. I have had hypothyroidism for 20 years. He said that he checked for a lot of “nasty things” and all the tests were negative. I asked him if ALS was an option and he said it was “still on the table.” My family is happy every time a test comes back normal but I know that in order to diagnose ALS, everything else must be ruled out.
The muscle weakness is getting worse. I cannot just rise up out of a chair and have to use the handicap stall for help getting off the toilet. I go down the stairs on my butt because I am afraid of falling. I take Baclafen to help with the spasticity but it makes me so tired. I am frustrated and afraid. I am also seeking a second opinion from the Neurology center at Vanderbilt Hospital. The one thing I am thankful for is that I have NO PAIN…none, nada, zero. That also frightens me because ALS is primarily not a painful disease. If I were in pain, I would feel better about my situation actually. How odd.
I am one of a thousand people who visit the internet in search of answers that are not readily available from a neurologist. It is a frustrating process that drives us to chat rooms such as these seeking reassurance or answers and I am grateful for any input that is provided. So….
About a two years ago I started noticing small changes in my body, more specifically, my legs. I went bowling and each time I tried to throw the ball, I fell. I also fell a few times doing routine things and noticed that walking downstairs was very difficult.
I went to the doctor and they said I was overweight and needed to exercise. About a year ago I fell off my bike. I cannot even say what happened exactly, I was stopping and put my leg out and then I was just on the ground. I noticed that I could not run and sadly, I could no longer dance. I tell my legs to bounce to the rhythm and it just does not happen.
In October of 2016, after an examination of my walking and balance, my PCP sent me to a neurologist. The neurologist noted hyperreflexia and suggested I might have MS. An MRI of my spine and brain was conducted and there were no lesions present. The neurologist said an EMG could be performed but he did not think it would show anything. I was very frustrated because at this point I walked like Frankenstein if he were a toddler! I did not have insurance so I just suffered in silence.
In March of 2017 I became insured and started seeing a new neurologist. He performed an EMG on my legs that was positive for damage. He also noted the muscle weakness, hyperreflexia, clonus and spasticity in my legs. He ordered an MRI on my lumbar, cervical and thoracic spine. The results indicated some mild damage to my spinal cord but I am 48 so it is most likely age related. I also had a spinal tap that showed some of my muscle enzymes were up. I also have myelin basic protein in my spinal fluid indicating a breakdown of myelin in the nervous system. My SED rate was 25 so there is inflammation in my body somewhere.
He performed about $10,000 worth of blood work and it only showed that my thyroid was a bit low. I have had hypothyroidism for 20 years. He said that he checked for a lot of “nasty things” and all the tests were negative. I asked him if ALS was an option and he said it was “still on the table.” My family is happy every time a test comes back normal but I know that in order to diagnose ALS, everything else must be ruled out.
The muscle weakness is getting worse. I cannot just rise up out of a chair and have to use the handicap stall for help getting off the toilet. I go down the stairs on my butt because I am afraid of falling. I take Baclafen to help with the spasticity but it makes me so tired. I am frustrated and afraid. I am also seeking a second opinion from the Neurology center at Vanderbilt Hospital. The one thing I am thankful for is that I have NO PAIN…none, nada, zero. That also frightens me because ALS is primarily not a painful disease. If I were in pain, I would feel better about my situation actually. How odd.
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