Old 09-18-2016, 01:43 AM #1 (permalink)
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Default Scared mum of three

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?
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Old 09-18-2016, 03:36 AM #2 (permalink)
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Default Re: Scared mum of three

ALS does not start this way.

Who said you have clinical weakness in the arm?
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Old 09-18-2016, 03:37 AM #3 (permalink)
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Default Re: Scared mum of three

I forgot to say that my reflexes were normal when tested by neurologist last week.
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Old 09-18-2016, 03:45 AM #4 (permalink)
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Would you mind answering my question?
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Old 09-18-2016, 03:47 AM #5 (permalink)
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Default Re: Scared mum of three

Hi Tillie,

Thank you for your reply. I value your feedback. You have asked a good question. My arm is painful when I use it and weaker than normal, but I still have full use of it. The neurologist acknowledged the atrophy in my shoulder but not clinical weakness. That's my own deduction. Since I saw him less than two weeks ago I have developed atrophy at base of both thumbs on the back of my hands which seems to be getting more pronounced by the day. Whilst I was reassured by him at the time, this development has once again ignited my fear.
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Old 09-18-2016, 06:55 AM #6 (permalink)
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Default Re: Scared mum of three

Iona, A patient can not perceive their own clinical weakness. Numbness and tingling dont usually follow with als. Have you had tests for your spine like xray,ct,or mri to look for a nerve issue like compression or other damage?
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Old 09-18-2016, 07:18 AM #7 (permalink)
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Default Re: Scared mum of three

Thnk you for your reply, gooseberry. I have had four MRI's: brain, c-spine, thoracic spine and lumbar spine. All clear except for some mild degenerative nerve damage on c-spine as outlined above.
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Old 09-18-2016, 02:33 PM #8 (permalink)
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Default Re: Scared mum of three

Thank you for answering clearly Iona.

You do not have clinical weakness, you have perceived weakness. This was really important to distinguish. Please read the sticky titled READ BEFORE POSTING - if you have, please read it again.

If it was ALS you would not have perceived weakness. We can't stress this enough and get it through - you don't feel weak, have numbness, tingling whatever.

Also you are highly unlikely to watch that muscle in your hand waste away in 2 weeks if it were ALS.

My husband was rapid progression, dead 11 months after diagnosis and he did not lose that muscle in his hand over 2 weeks.

Rather than asking strangers on the internet who cannot examine you, it would be best to return to your doctor and keep working with him/her to find out what is going on. All the best
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Old 09-19-2016, 12:36 PM #9 (permalink)
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Default Re: Scared mum of three

Thanks for your clarity, Tillie. I have not correctly understood what clinical weakness meant before now.

I am awaiting EMG's and results of blood tests. In the meantime, I will return to my PCP.

Sincere gratitude for taking the time to reply.

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