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Blondrea

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I am terrified. My boyfriend has had fasciculations all over his body for two years. He went to a neurologist recently, who said he tested weak in his hand. He went back for EMG and NCS. At that point, the neurologist said that fibrillations were detected, and Motor Neuron Disease was “highly likely.” When asked if that meant ALS, she again said “highly likely.” And, when we pulled his office visit record up online, and it says: Diagnosis – Motor Neuron Disease.

We are sick with shock. Other than the fasciculations, which have been going on for two years, he has no other symptoms. He can pick up two iron skillets with his “weak” hand. His balance is perfect. No slurs. No foot drop. No fine motor skill problems. He can run five miles uphill, and is the leader of a hiking group.

So I am wondering, are EMG tests so reliable that someone would make a diagnosis of “highly likely”? Granted it was in conjunction with the NCS and strength tests. I know that the EMG is the “gold standard” of the tests, but is it that strong and reliable of an indicator?

Has anyone else experienced this? No symptoms and being told that ALS is “highly likely”?

We are awating a referral to a Motor Neuron Disease specialist. Any advice/input would be tremendously helpful. Thank you!
 

Atsugi

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I'll give practical advice:

First, if you might have a fatal disease, buy life insurance prior to getting a diagnosis.

Second, bring a checklist to ask the MND specialist every question you can think of, and write down the answers so you don't forget. And don't leave without understanding the answers.

The EMG is very reliable, and can show trouble prior to symptoms. I hope your boyfriend's diagnosis is not ALS.

Good luck.
 

cheerleader

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They need to do many tests to rule out other things. If tests haven't been done for these, it is too soon to say ALS for sure. Wait for a second opinion by a neurologist who specializes in ALS. Good luck! Hope the doctor was wrong!
 

Blondrea

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I should also have mentioned that he had an MRI which showed no abnormalities.
Blondrea
 

azgirl

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> Other than the fasciculations, which have been going on for two years, he has no other symptoms. He can pick up two iron skillets with his “weak” hand. His balance is perfect. No slurs. No foot drop. No fine motor skill problems. He can run five miles uphill, and is the leader of a hiking group.

This paragraph makes me think not ALS. Go see a neuromuscular specialist for second opinion.
 

Nikki J

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As azgirl says. Plus if fibrillations are only finding on EMG that is not diagnostic for ALS. DEFINITELY need a neuromuscular specialist
 

Blondrea

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Thank you, thank you, thank you. What a kind generous group.
 

skipper66

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Good luck. I sure hope they find out it's something other then ALS. We are hear though if you need us.
 

Blondrea

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I think you with all my heart!
 

Blondrea

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Make that THANK you with all my heart!
 

MaxEidswick

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> Go see a neuromuscular specialist for second opinion.

Ditto that!

the world is filled with neuro-quacks. see an ALS specialist!



Max - Monday, October 27, 2014 7:41:14 PM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


.
 

guguy

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I'll give practical advice:

First, if you might have a fatal disease, buy life insurance prior to getting a diagnosis.

Second, bring a checklist to ask the MND specialist every question you can think of, and write down the answers so you don't forget. And don't leave without understanding the answers.

The EMG is very reliable, and can show trouble prior to symptoms. I hope your boyfriend's diagnosis is not ALS.

Good luck.

My personal experience (and maybe it is because of my age, 65) is that long term care and life insurance applications ask questions about if you have been seen by a neurologist in the last 2 years and if yes a bunch of other questions. Needless to say I was turned down. It has been 4 years since my dirty EMG and I am still working however so there is always hope. I never could run 5 miles in my prime.
 

Dusty7

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EMGs don't make mistakes but the doctors doing them and, more importantly, interpreting them do. As others have said, see a specialist in MND.

ALS is a diagnosis of exclusion. Have blood tests for Lyme, cancer, MMN, etc., etc., etc. all been done? If not, you're a long way from diagnosis.

ALS is a disease of widespread, acute and chronic denervation. By themselves, a few fibs are not diagnostic of anything, in my non-doctor's opinion.

Find an MND specialist, the sooner the better. You don't want to live in this "highly likely" diagnosis.
 

Blondrea

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Thank you thank you thank you! We are meeting with the MND specialist in about two weeks. Thank you for so generously sharing your advice. It is very much appreciated.
 
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