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Aswanson

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CALS
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NH
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Wakefield
Hi,

Last I wrote my husband had an appointment with his new neurologist where he had diagnosed him him with bulbar palsy (per report we received) and was questioning bulbar onset ALS.
This past week he went and had an EMG. We are so confused now because at the end she said she was thinking psedubulbar palsy and at right now does not have ALS, but still wants him to meet with an ALS specialist to make sure she's on the right track.

The EMG was "surprisingly normal" as she wrote, but yet she also states there were occasional fasciculations ( in the tongue are during test)??? How is that normal and not inconclusive at least?
She made mention of "no extremity fatigue, brisk jaw jerk, profound dysarthria, visual tongue fasciculations and atrophy, tongue weakness and failing to protrude to midline, lip weakness and mild hypophonia
No facial weakness. "
These were the key points she made. I'm quite happy if it's the case, but in her report even she talks about bulbar onset ALS and with the EMG being more consistent with pseudobulbar ... I get the impression she was very shocked at the reading?
All of this really came to head in Jan, 2016 - is it possible it wouldn't show up in multiple spots yet on the EMG or is it really pseudobulbar ?

Thank you for your thoughts. We are just so frustrated and all he wants to do is go back to work :(

Amy
 
Pseudobulbar palsy is not a dx in itself. It is a symptom caused by some other dz. Progressive bulbar palsy is one of the ALS cousins. Then there is bulbar-onset ALS, a different disease. A 2nd opinion is definitely indicated.

Best,
Laurie
 
Thank you Laurie!
So very confusing when his original neuro is saying bulbar palsy and then the neuro that did the EMG was saying all that. It's all so confusing and overwhelming.

Amy
 
Can you post the notes from the rpt? We might be more helpful. In particular, when you say "bulbar palsy," I am not sure if there is a "progressive" in front.
 
Laurie,

I can, yes. The neuro who did the EMG was saying she believing it to be pseudo in her report. It was the neuro who eval'd him and sent him for EMG's report that under Dx says bulbar palsy (no progressive in front) , but he was suspecting onset bulbar ALS , hence the EMG.
That's why we are so very confused- so many different words but none that make sense. I can get the first report too if that would make it easier? Do I just upload as attachment?

Much appreciated!
Amy
 
Yes, you can upload any image as an attachment after you cross out whatever you don't want to be read.
"Bulbar palsy" is not a disease entity any more than "pseudo BP" -- so if someone is writing that as a diagnosis, that is a sign that they are perhaps not specialized in the field. Are you pursuing a consult in Boston? Where is the ALS specialist to whom he's being referred?
 
Laurie,

I will get those uploaded! He's currently going to Dartmouth Hitchcock Medical Ctr in Lebanon, NH
Neither neuro (initial consult or one who did EMG) are ALS specialists- they did say they wanted him to see one of the specialists; when that will be I don't know.

Thank you so very much!
 
Laurie,

Thank you so much for taking your time to look at these- Dr. Lu is from 3/17 and the initial consult where the bulbar palsy is dx. Dr. La is from 4/21 when he had the EMG and she had said pseudo.
I think hubby scanned the whole report- sorry.

Thank you again so much.

Kindly,
Amy
 

Attachments

  • Dr. Lukovits Report04262016.pdf
    5.4 MB · Views: 548
  • Dr. Lawson Report04262016.pdf
    3.7 MB · Views: 502
Ah, now the "pseudo" variety makes more sense. It can be caused by bilateral strokes, as he evidently has had. She does have some possible differentials like OPMD (a type of muscular dystrophy) that are interesting enough to pursue. Does he have difficulty keeping his eyes open or focusing? As the first neuro points out, it's always suspect to think about two disease processes with similar features at once, but in this case, I would not be shocked.

Let them refer you to an ALS specialist, but if it were I, I'd be headed to Boston (MGH) given his complex history -- the injury, epilepsy, there's a lot of neuro stuff here and well, this is a teaching case. But she is right -- even given that things came to a head in Jan., a clean EMG this month is reassuring -- and I understand why she was amazed at how normal it was.

Best,
Laurie
 
Laurie,

I can't thank you enough again for taking the time out of your day and evening to respond and read. I agree, as most everyone hubby has dealt with, has said he's a perplexing case. The blood work for the OPMD and thyroid came back normal already. I will talk to hubby about getting a referral to MGH and we will continue to remain positive with the recent results!
Thank you again!
Kindly,
Amy
 
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