Bonnie828
New member
- Joined
- Apr 25, 2018
- Messages
- 3
- Reason
- PALS
- Country
- US
- State
- Florida
- City
- Gainesville
This is my first post here, I am a 43 year old mom of 7 so I'm sure like most I can't help but think this can't be happening to me....My symptoms began in October of 2017 with constant headaches and a dull ache in my back shoulder area I seen my GP dr. Who sent me to get a ct scan of my lungs..when I returned for my results which revealed something called ground glass nodules and interstitial lung disease but my Dr did not seem concerned with that, at this point I had begin to experience weakness in my right hand I could not open bottles and jars and Packaged food.
My Dr sent me to have an EMG, upon returning for those results I could no longer touch my thumb to my pinky finger no matter how hard I tried and the muscle twitches were wide spread and reoccurred constantly it literally looks like a worm or alien crawling under my skin, my EMG revealed severe nerve damage and I referred back to the neurologist that performed my EMG..he did a physical examination and performed a series of little test he 3then sent me for blood work which was all ok except for presence of antibodies, he then sent me for more blood work and brain and spine MRI s along with a spinal tap and lots more blood work .
All test were somewhat ok except for the brain scan..So the neurologist looks at me and says I believe you have ALS but I do not want to give you that label yet he wanted me to do IVIG treatments for 2 months which still have not started...insurance problems...
i knew nothing about ALS except it was a crippling disease imagine my shock when I researched it. So here I am getting weaker I can no longer straighten my index or ring finger or button up mine or my kids clothes I can't wash dishes (thank God for teenagers ages 13 and 16) or unbuckle my babies (ages 2 and 4 yr. Olds) carseats. I have fallen twice and am tired all the time of any walk briskly let alone run which is not good when raising young kids (all boys )..
So my concern here is though I have all the symptoms of ALS what I don't understand is the unbearable pain in my shoulder that seems to radiate to wrist and settles into my elbow and top of hand thumb side..I wake up with so much pain fist clinched and hard to open and it's very difficult to move as the pain in my shoulder is so intense..does anyone else experience this and could this be something else anything else except the death sentence I've seemed to be handed?
My Dr sent me to have an EMG, upon returning for those results I could no longer touch my thumb to my pinky finger no matter how hard I tried and the muscle twitches were wide spread and reoccurred constantly it literally looks like a worm or alien crawling under my skin, my EMG revealed severe nerve damage and I referred back to the neurologist that performed my EMG..he did a physical examination and performed a series of little test he 3then sent me for blood work which was all ok except for presence of antibodies, he then sent me for more blood work and brain and spine MRI s along with a spinal tap and lots more blood work .
All test were somewhat ok except for the brain scan..So the neurologist looks at me and says I believe you have ALS but I do not want to give you that label yet he wanted me to do IVIG treatments for 2 months which still have not started...insurance problems...
i knew nothing about ALS except it was a crippling disease imagine my shock when I researched it. So here I am getting weaker I can no longer straighten my index or ring finger or button up mine or my kids clothes I can't wash dishes (thank God for teenagers ages 13 and 16) or unbuckle my babies (ages 2 and 4 yr. Olds) carseats. I have fallen twice and am tired all the time of any walk briskly let alone run which is not good when raising young kids (all boys )..
So my concern here is though I have all the symptoms of ALS what I don't understand is the unbearable pain in my shoulder that seems to radiate to wrist and settles into my elbow and top of hand thumb side..I wake up with so much pain fist clinched and hard to open and it's very difficult to move as the pain in my shoulder is so intense..does anyone else experience this and could this be something else anything else except the death sentence I've seemed to be handed?
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