Iona
New member
- Joined
- Sep 17, 2016
- Messages
- 8
- Reason
- Learn about ALS
- Country
- IRL
- State
- Galway
- City
- Galway
To everyone who contributes to this site, thank you. I have spent many hours reading as I'm v worried and awaiting blood test results and an EMG. Your post to read before worrying is most helpful and had sustained me until recently.
My symptoms began nine months ago when I started waking up at night with numbness and tingling in both arms. It would go away when I shook then out but then come back several times during the night. Not every night but most. It was accompanied by a daytime tremor, which felt like it was coming from my core. Saw a neurologist. Tested for Carpel Tunnel Syndrome. Negative. Had an MRI of C-spine. Negative except for some mild nerve damage which he told me could account for my symptoms if they were just in right upper quadrant, but not both arms. He was not overly worried, so I took his reassurance. My symptoms reduced over time and went away entirely for six weeks. So far, so good.
Then I woke one night two months ago with both arms and now also one leg numb. Again it went away when I shook it out but returned many times during the nights that followed. Scared the life out of me. New symptoms quickly followed: buzzing sensation in my right calf, intense pain in right shoulder that has spread down my arm and twitching and fasciculation's all over, especially at rest and when trying to sleep. My PCP referred me to a different neurologist for a second opinion. In the intervening time I have had my brain MRI and rest of spine. All clear. They tell me that means it's not MS.
I had to wait six weeks for the neurology appt . In that time my right arm dis improved. It is now weak (yes, clinically) and atrophied around my shoulder and my thumb. I finally saw the neurologist last week. He was reassuring and said unlikely ALS. He noted that atrophy on my shoulder and hand, however, and has sent off a tonne of bloods and for an EMG and another nerve conduction study. Seven week wait for EMG.
I should say I am an otherwise healthy 40 year old mother of three kids under 8. I am not prone to anxiety usually but am driven up the walls with worry now.
My question is, has anyone with ALS had a disease onset like this?
Iona
My symptoms began nine months ago when I started waking up at night with numbness and tingling in both arms. It would go away when I shook then out but then come back several times during the night. Not every night but most. It was accompanied by a daytime tremor, which felt like it was coming from my core. Saw a neurologist. Tested for Carpel Tunnel Syndrome. Negative. Had an MRI of C-spine. Negative except for some mild nerve damage which he told me could account for my symptoms if they were just in right upper quadrant, but not both arms. He was not overly worried, so I took his reassurance. My symptoms reduced over time and went away entirely for six weeks. So far, so good.
Then I woke one night two months ago with both arms and now also one leg numb. Again it went away when I shook it out but returned many times during the nights that followed. Scared the life out of me. New symptoms quickly followed: buzzing sensation in my right calf, intense pain in right shoulder that has spread down my arm and twitching and fasciculation's all over, especially at rest and when trying to sleep. My PCP referred me to a different neurologist for a second opinion. In the intervening time I have had my brain MRI and rest of spine. All clear. They tell me that means it's not MS.
I had to wait six weeks for the neurology appt . In that time my right arm dis improved. It is now weak (yes, clinically) and atrophied around my shoulder and my thumb. I finally saw the neurologist last week. He was reassuring and said unlikely ALS. He noted that atrophy on my shoulder and hand, however, and has sent off a tonne of bloods and for an EMG and another nerve conduction study. Seven week wait for EMG.
I should say I am an otherwise healthy 40 year old mother of three kids under 8. I am not prone to anxiety usually but am driven up the walls with worry now.
My question is, has anyone with ALS had a disease onset like this?
Iona