Old 07-02-2016, 03:43 PM #1
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Default Docs think mom has ALS, final dx coming Wed, help

Mom has lost a lot of strength in her left arm since March. Now it's starting in her right arm. she can still move all her fingers, but cannot lift anything with her left arm. Her forearms are now really soft, like there is only bones and skin, no muscles. She has no weakness or numbness in her legs. She does however get spastic feelings in both arms and legs.

We will visit a MND clinic Wed again for a final Dx. I am freaking out, help! I want to know if it really is ALS, thanks everyone.

Last edited by SpAd : 07-02-2016 at 03:45 PM Reason: Added info
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Old 07-02-2016, 03:51 PM #2
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Default Re: Docs think mom has ALS, final dx coming Wed, help

I am sorry to hear this

What kind of doctors has she seen so far?

What tests has she had and what were the results ( EMG results especially)?

She is going to the right place is she going to be seen at an MND clinic. Read the sticky about getting a diagnosis. It will help prepare for the appointment
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Old 07-02-2016, 03:57 PM #3
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Default Re: Docs think mom has ALS, final dx coming Wed, help

Hi Nikki,

She has seen a neurologist, who did EMG study. She then saw a neurosurgeon, who did MRI of spine. She was then referred to MND clinic. All the results came back normal (EMG, MRI, etc.)
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Old 07-02-2016, 04:02 PM #4
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Default Re: Docs think mom has ALS, final dx coming Wed, help

If her emg was normal I do not understand why they think it is ALS? Generally ALS is diagnosed by findings on the physical exam AND on the EMG. A normal emg should have them looking elsewhere
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Old 07-02-2016, 04:09 PM #5
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Default Re: Docs think mom has ALS, final dx coming Wed, help

Sorry,

I re-read the report, some nerves showed EMG prolonged latencies. Some were normal.
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Old 07-02-2016, 04:16 PM #6
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Default Re: Docs think mom has ALS, final dx coming Wed, help

That sounds like it was the nerve conduction part of the study ( ncs and emg are usually done together). In ALS generally the emg is abnormal and the ncs is normal. It sounds like your mom had the opposite which makes saying ALS more confusing. If you want to post the impression/ summary in its entirety it might help us answer better
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Old 07-02-2016, 06:51 PM #7
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Default Re: Docs think mom has ALS, final dx coming Wed, help

Here is the summary from neurologist. . We're hoping for the best, preparing for the worst. Thanks a bunch
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Old 07-02-2016, 07:09 PM #8
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Default Re: Docs think mom has ALS, final dx coming Wed, help

I was able to read this on the mod page but not here on the thread. Sorry if that is the case for all following the thread. Your mom had abnormalities on the EMG as well as the ncs issues you mentioned previously. I see now why you have been referred on. You certainly have reason for concern but you need to see the neuromuscular specialist. It certainly happens on occasion that the opinion of the general neurologist is overturned. Read Kerbear's post today. Wishing you the best for the appointment and please let us know
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Old 07-02-2016, 07:58 PM #9
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Default Re: Docs think mom has ALS, final dx coming Wed, help

I am not sure if you're aware of Lunasin, but it helps some patients slow the progression. Here's what I've read: Trial: ALS Reversals - Lunasin Regimen
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Old 07-03-2016, 10:07 AM #10
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Default Re: Docs think mom has ALS, final dx coming Wed, help

Lunasin is discussed here on several threads. You can do a search and read. At the moment any improvements are anecdotal but some of our members are trying it, in and out of Dr Bedlack's trial.
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Old 07-18-2016, 09:35 AM #11
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Default Re: Docs think mom has ALS, final dx coming Wed, help

Final diagnosis is ALS. It's been 2 weeks. I will monitor these forums closely now.
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Old 07-18-2016, 09:48 AM #12
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Default Re: Docs think mom has ALS, final dx coming Wed, help

So sorry to hear of your mom's diagnosis. You'll find a lot of support and information on this forum.
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Old 07-18-2016, 07:13 PM #13
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Default Re: Docs think mom has ALS, final dx coming Wed, help

Very sorry to hear of the diagnosis. This is such a great and supportive place, come back when you can.
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