Preliminary Diagnosis - but clean EMG

[hovihea]

Since January my boyfriend has been struggling with some symptoms that appear to be ALS in some regards but in other ways we think it certainly is not. He had an EMG in August which clearly states no sign of motor neuron disease. We were relieved. We have had multiple referrals which led us to driving several hours from home to Baylor University Hospital in Dallas, TX, where after seeing our second doctor there on Tuesday we were told the symptoms are characteristic of what is seen in an ALS patient and we have been referred to another neurologist that specializes in ALS to do a more extensive EMG. I had read on one of the boards here if your EMG is clean you don't have ALS. Is it possible the EMG could not have been extensive enough? Here are the symptoms he has - foot drop, starting to have hand drop, weakness in leg and in arm on right side; twitching all over the entire body; tripping, falling; reflexes are super reflexive - not sure how to word that but when they tap his knee he nearly knocks them over with a kick; he can't run, jump or walk on his heels; he can still push against them when they ask him to although you can see the difference from the right to the left; he has lost muscle mass in his arm and has lost about 7 lbs this year, he hasn't lost any muscle mass that we can tell in his legs. Several doctors have mentioned doing a spinal tap but the neurologist we saw on Tuesday said that wasn't necessary with as many symptoms as he has. I have read the stickys I have read through many posts I'm just not seeing one that says your first EMG might be wrong and I'm asking for thoughts on that. Please be nice I'm in a very emotional stage right now, thank you.

 

[Nikki J]

TheEMG is only as good as the person who is doing it of course. Also if you have ALS only in your left arm and they do your right leg it will not show. In very very early stages that could apply to individual muscles. Has anyone said PLS is a possibility? EMG is normal there but clinical exam is not.
So sorry you are dealing with this. Please keep us updated

 

[skipper66]

I'm am so sorry you are going through all this. My father goes to see a ALS specialist in Dallas named Dr. Heinzman.(sp?). He is fantastic and know all the in/outs of ALS completely.

 

[hovihea]

That is the doctor he has been referred to. From reviews we have read he seems good.

 

[hovihea]

What is PLS? No one has mentioned it. I too had thought the test is only as good as the person doing it. The doc who did the EMG has been practicing for 32 years but I realize that doesn't mean she can't make mistakes.

 

[Nikki J]

PLS is primary lateral sclerosis. It is a motor neuron disease that only affects upper motor neurons. Since EMG only assesses lower motor neuron damage people with PLS have normal EMGs. There may be reasons in his clinical presentation that make PLS not a possibility but you might want to at least look into it a bit.
Many neurologists say PLS is just one end of a continuum with ALS at the other but it is slower progressing and generally considered not fatal