Lindanickole
New member
- Joined
- Sep 22, 2016
- Messages
- 5
- Reason
- Other
- Country
- Us
- State
- Nebraska
- City
- Omaha
Hello,
First I apologize if I'm posting in the wrong section I am new to this site. I am posting in hopes of getting some opinions from those who have ALS or are wondering themselves.
My grandmother passed away from the disease In 2001. From what I have read familial is rare but it is concerning. I am 34 and it all started maybe 6 months ago but I am unsure of the start as I initially thought this was all neck related. I had been having a tight neck and upper back and was put in pain management. Now if I don’t count my neck as the start of this I would say in July of this year was. I got very fatigued and began to trip and drop things more than one should. To make this easier I will list my symptoms the best in order the best I can remember:
Extreme fatigue
Upper back pain/ intermittent arm pain
A feeling deep in my thigh of a little jolt
Leg pain mainly calves
Start tripping and dropping things frequently
Noticed increased weakness Mainly my right side
Muscles begin to jerk/twitch by themselves in legs at first then moving upward to become widespread
Difficultly opening jars or lifting things
Joint pain and morning stiffness
Loss of some sensation on skin throughout body /intermittent pins and needles
Intermittent Burning pain, stabbing pain, itchy legs, feelings on bugs on skin or little tickle sensations under skin
Increased heartrate with exertion or sporadically at rest, intermittent dizziness, air hunger
Intense Sweating episodes followed by extreme cold.
Mental confusion/ cloudy or absent minded.. "Such as getting up and forgetting why I got up.”
Headaches /intermittent increased sensitivity to bright lights or normally ignored unexpected noises. “The ice maker made me jump” etc..
Mild jaw pain
Tongue fasciculation’s that I hadn’t noticed until looking at my tongue while brushing teeth
Voice changes that are becoming more frequent / a feeling of something at the base of throat where it meets the chest. Voice Sounds similar to spasmodic dysphonia.
muscle atrophy that is visible in right leg
pain when using fingers for things like using tweezers or handwriting, even typing to long.
To me some of this does not match what I've read about ALS but it's so hard to tell. I have seen a nuerologist I have an Emg on Monday. I've had MRI of brain, brain wave test, MRIs of my spine and a lumbar puncture..(which by the way was more painful than giving birth and took 5 tries !) all tests were relatively normal. Aside from some little abnormalities and idiopathic ones mentioned that I don't understand. So if it was not showing on any of those then it wouldn't be ALS right ? I know it's something I just don't know what... Any input is appreciated.
Thanks,
Linda
First I apologize if I'm posting in the wrong section I am new to this site. I am posting in hopes of getting some opinions from those who have ALS or are wondering themselves.
My grandmother passed away from the disease In 2001. From what I have read familial is rare but it is concerning. I am 34 and it all started maybe 6 months ago but I am unsure of the start as I initially thought this was all neck related. I had been having a tight neck and upper back and was put in pain management. Now if I don’t count my neck as the start of this I would say in July of this year was. I got very fatigued and began to trip and drop things more than one should. To make this easier I will list my symptoms the best in order the best I can remember:
Extreme fatigue
Upper back pain/ intermittent arm pain
A feeling deep in my thigh of a little jolt
Leg pain mainly calves
Start tripping and dropping things frequently
Noticed increased weakness Mainly my right side
Muscles begin to jerk/twitch by themselves in legs at first then moving upward to become widespread
Difficultly opening jars or lifting things
Joint pain and morning stiffness
Loss of some sensation on skin throughout body /intermittent pins and needles
Intermittent Burning pain, stabbing pain, itchy legs, feelings on bugs on skin or little tickle sensations under skin
Increased heartrate with exertion or sporadically at rest, intermittent dizziness, air hunger
Intense Sweating episodes followed by extreme cold.
Mental confusion/ cloudy or absent minded.. "Such as getting up and forgetting why I got up.”
Headaches /intermittent increased sensitivity to bright lights or normally ignored unexpected noises. “The ice maker made me jump” etc..
Mild jaw pain
Tongue fasciculation’s that I hadn’t noticed until looking at my tongue while brushing teeth
Voice changes that are becoming more frequent / a feeling of something at the base of throat where it meets the chest. Voice Sounds similar to spasmodic dysphonia.
muscle atrophy that is visible in right leg
pain when using fingers for things like using tweezers or handwriting, even typing to long.
To me some of this does not match what I've read about ALS but it's so hard to tell. I have seen a nuerologist I have an Emg on Monday. I've had MRI of brain, brain wave test, MRIs of my spine and a lumbar puncture..(which by the way was more painful than giving birth and took 5 tries !) all tests were relatively normal. Aside from some little abnormalities and idiopathic ones mentioned that I don't understand. So if it was not showing on any of those then it wouldn't be ALS right ? I know it's something I just don't know what... Any input is appreciated.
Thanks,
Linda