Back to the neuro.

[Mtzu]

In just over a week I'm scheduled to go back to the ALS specialist for further evaluation. I want to make sure I make the best use of the time so I'm putting together a list of questions. There are a couple of things that I'm not sure are worth bringing up so any input will be helpful.

The weakness they found is in my hands. I've noticed that the weakness is much more profound when my hands get cold. When I warm them up they are much, much better. Has anyone else experienced this? Should I mention this to her?

My widespread twitching seemed to get much better. Then about a week ago fired up on all cylinders again. Does that indicate anything?

If anyone has any suggestions as to what to ask the neuro I'd like to know.

I'm not sure what to expect. They didn't say anything about another EMG or NCS. I guess they will do the strength and reflex tests.

 

[Mtzu]

While I'm at it the following are from my NCS. I'm wondering if there is anything here I should bring up with her.

“Left ulnar-FDI CAMP showed reduced amplitudes, mild slowing (but not focal slowing across elbow), and normal distal latency. “

“Left ulnar-ADM CMAP showed mild slowing of conduction velocity across the elbow with normal amplitudes and normal distal latency.”

“Both ulnar-D5 SNAPs showed borderline prolonged peak latencies with normal amplitude.”

This is all new to me. I'm in so over my head and overwhelmed. Thanks in advance for any help.

 

[Nikki J]

Did you get clarification on that probable ALS question? What you should be talking about hinges on whether it was probable ALS by the diagnostic criteria or more a maybe ALS. I thought you were going to call and find out?

 

[Mtzu]

Hi Nikki, I called one time, couldn't get hold of the Dr., and the person I spoke with couldn't tell me. Actually if the Dr. acts the same way this time as she did the last I may ask for a different one. That said you just gave me a good question to ask. On the scale (the name of which escapes me a the moment) where do I fall? That will question number one. Thanks.

 

[Mtzu]

I should add that the following was written at the bottom of my EMG report.

"Technically, the study falls just short of meeting the strict El Escorail electrical criteria for motor neuron disease as there were not both active denervation and chronic reinnervation changes seen in muscles of two different peripheral nerves and two different nerve roots, but despite that, the findings are highly suggestive of such a condition."

 

[Tony292]

Welcome to my world, I had almost the same sentence in my EMG report that I approached, but did not quite reach the lower motor portion of the El Escorial criteria for lower motor neuron disease. All you can do is wait. If it indeed ALS it will happen fast, if PLS, then it will happen slow, my progression for three years has been extremely slow and frustrating. I feel like the guy in the Radiohead song "Creep" like what the hell am I doing here, in an ALS forum... I don't belong here.. But I don't belong anywhere else either for that matter. All you can do is wait and continue with further EMG and Neuro testing six months, a year down the line. Regardless of the outcome, come on online and let us know something. We all learn here from each other.

 

[Mtzu]

Hi Tony, Thanks for the reply. Yes, next week I return to the ALS neuro four months after my first visit. After three years you probably have a lot of experience with the waiting game. It's all new for me. I'm just trying to be as ready as I can.