No mention of MND after EMGs?

[helkat22]

I am grasping at straws hoping that my mom was falsely diagnosed with ALS (though in my gut I know all her symptoms point to it).
Do you find it weird that she had one EMG on 4/13/15 and the neurologist (who I didn't care for at all) never indicated anything associated with MND.
Then she had a repeat EMG on 10/27/15 by a different neurologist (not in any way affiliated with the first) and again there was no mention of MND...she thought it might be lower back related and referred her for more testing (additional MRIs with and without contrast and a lumbar puncture).
After all those came back negative, she referred to a MND specialist who diagnosed her with ALS.

Thoughts?

Thanks!
Helga

 

[Nikki J]

Are you looking at the EMG reports? Or are you saying it was not mentioned to your mom? If the first 2 EMGs reports show no abnormalities and there was no third EMG done then it does seem odd but it sounds like something definitely showed on the second that prompted the MRI.

 

[helkat22]

I have a copy of the first report but not the second. It was after the second EMG that the neurologist said that she believed it was lower back related.

 

[lgelb]

I would certainly want to walk through the last EMG, the MRIs, labs and exam results w/ the specialist who diagnosed her, as you would always want to understand the process. At what center does s/he practice?

 

[helkat22]

She was diagnosed at Geisinger.

The first EMG report states:
"This is an abnormal study due to changes consistent with acute and chronic lumbar polyradiculoptahy bilaterally. A mixed motor sensory polyneuropathy with predominantly demyelination change is also noted."

 

[lgelb]

That summary's a long way from an MND. It does suggest a spine problem but also other possibilities. Is she diabetic? Got the 2nd EMG rpt? And the MRIs/CSF were all negative? Did she see Dr. Friedenberg?

I would go to Penn State (Hershey ALS center) or Philly (Penn or Drexel) for a 3rd opinion.

 

[helkat22]

I don't have the second report, but I may be able to get it today.
She sees Neil Holland.
There is an ALS clinic associated with Lehigh Valley hospital, which is pretty close to me. I was thinking of going there. Though Hershey wouldn't be too bad.

Thanks!
Helga

 

[Nikki J]

Getting the second emg report would be good. What about Dr Holland's clinical note? Yes things should have been properly explained your mom is owed that but seeing the note might explain things. Getting a note is almost certainly easier than getting an explanation from the doctor without another visit. He does seem to have strong credentials though.

I looked at the Lehigh website. It seems like it is a full clinic though it was not clear to me whether the staff worked exclusively with ALS or with patients of the neuroscience center. Something to ask/ observe if you go there. What I did not see was a list of their doctors. If you go there for an opinion check out the resume of the doctor. You want, of course, a neuromuscular physician with decent fellowships in neuromuscular

 

[helkat22]

We have an appointment with Dr Holland at the ALS clinic today, so I will be sure to ask.

Thanks for all your input. I completely appreciate it

 

[Nikki J]

Oh terrific. He should be able to explain his diagnosis then.

 

[Alex123]

MND is not the same as ALS but includes many other diseases.
That ALS diagnosis might me wrong, and once a doctor gives you a diagnosis he/she will usually be reluctant to change. I don't mean that is a characteristic of medical doctors. I think it is just a typical human behavior.
The first EMG may be wrong, but if it is right it points to something different than ALS as demyelination is not typical in that disease.
On the other hand multifocal motor neuropathy (a different MND) with conduction block has loss of myelin.
See: Medscape: Medscape Access
If I were you I would try to have her seen by another neurologist that specializes in motor neuron diseases.

 

[helkat22]

Dr Holland does specialize in motor neuron diseases. And I know ALS is a specific type of MND...but NO MND was mentioned after either of the EMGs (neither conducted by Dr Holland).
He did say today that they were both abnormal and that sometimes you have to take a step back and look at the big clinical picture and not just focus on specific test results (which seems to be what the previous two neurologists were doing).
He was more than willing to send us for a second opinion, but I really don't feel like we need one. My gut was telling me it was ALS even before she was diagnosed...I was just hoping that it wasn't.

On a positive note, her breathing is great, according to her PFT today. He mentioned a number of 127, but I don't know what that corresponds to.

So, that was our day.

Thanks,
Helga

 

[lgelb]

Diverging opinions, Alex, are actually quite common in the MND diagnostic process. That is why we encourage the newly-diagnosed to get at least a second opinion, and if that contradicts, the first, and/or there are atypical features, a third.

Helga, 127% of expected FVC or SVC means her breathing was better than expected for her height. That's a good thing, for sure.