Necessary?

Status
Not open for further replies.
Well today, I had my 3rd EMG, since March.
EMG sampling of selected muscles of the left proximal and distal arm, left sternal mastoid, right genioglossus left corrugator, orbicularis oculi and orbicularis oris was normal. No acute denervation, abnormal activations, myokymia or myotonia was recorded
No acute denervation was recorded.

My neurologist has stated she wants to do a lumbar puncture, and mentioned Progressive Bulbar Palsy. I feel like I have been kicked in the stomach. I feel so numb.
 
I'm pretty confused by your account. With no EMG abnormalities in muscles sampled, including bulbar ones, not sure how/why PBP comes into play.

There are a number of differentials that analyzing spinal fluid could flag or rule out.
 
I agree this is confusing - lovely clean EMG should not include thinking you have PBP.
All the best with the next lot of testing, I think your outlook is a little brighter than you may have thought. I sure hope so, that EMG result should give you a lot of relief.
 
I am literally just as confused!!
My neurologist could not perform the EMG- one of her colleagues did. He stated everything was normal, and I will hear from Dr. Meyer.

She called me late afternoon, and was going over some things. She noted, my hoarse/raspy voice along with my slurring, which was more prominent than when I had seen her last.
She then mentioned, further testing.
I was confused, as I just had ‘testing’.

She went on to explain upper end lower motor nuerons and what is picked up on an EMG, snd so on. Totally lost me, not going to lie.
I of course asked, what does this mean?
She explained, I am looking for something progressive that would not show on the EMG, something upper motor nueron, only. Again, I was completely baffled. I then asked, what she was referring too, and possibly looking for.
She stated-PBP.

Being quite baffled, I exclaimed, what- wouldn’t that have shown?
She replied, no.
I am left perplexed, and not comprehending any of this, other than she wants it done, ASAP.

So what does a lumbar puncture show?
Because apparently she lost me, at hello.
 
Last edited:
Could she have said pseudobulbar palsy? That has a number of causes and does not affect lower motor neurons so would not show on emg

a lumbar puncture can give a lot of information and even if not diagnostic could tell her a lot.

while I understand you are confused and anxious learning your lower motor neurons are not dead is good news and should not make you feel “ kicked in the stomach”.
 
Hi, Nikki-
She said PROGRESSIVE Bulbar Palsy.
I asked her to repeat. I even stated that I had come across that and read about it, and her response was, yeah.. I am sorry, but no diagnosis I give you, is going to be a welcoming one.
I am so confused. Wouldn’t that have been picked up on the EMG?
 
Well my understanding is progressive bulbar palsy is both upper and lower motor neuron so I would have expected it to be seen on emg yes. That’s why I thought pseudobulbar palsy might be on the table. You need to organize some questions and contact her. It is reasonable to say that you were upset and didn’t take it all in and could she clarify. If you have a message function in your patient portal you might send the questions If you need to talk ask her to call after reviewing them. If you don’t just call and ask her to get back to you
 
Thank you, I will message her.
Or maybe I’ll just take a mental break and do some meditating over the next week or so.
These last five months have been a wild ride, and the stress has been overwhelming.
I am certainly not getting better, and progressing whatever this may be, but I have been on such anxiety overload, I am ready to just be at peace, and let whatever happens, happen!
If that makes sense.
While I want to know what is happening, I need to redirect my energy, for sure.
 
Hi, all!
Still in this crazy diagnostic limbo.
Had a question in regards to such.
My neurologist has stated due to my ‘clean’ EMGs and only a score of 46 out of 48?, it’s a wait and see approach.
She stated I am unable to accumulate points for palate and nasal weakness, and only for speech and swallowing.
My symptoms are all documented and acknowledged;
Nasal passages are weakened, and have a tremendous amount of thick secretions- constant post nasal drip, and phlegm build up in throat.
Palate weakness- air goes out my nose when I speak.
Nasal regurgitation with both food and liquids.
Speech difficulties- slurring words.
Raspy/hoarse voice.
Swallowing difficulties.
Fasciculations head to toe including, face, lips, and tongue.
Tongue is smaller around the edges, and scalloped.
She has offered symptom management in the mean time. I am appreciative of her concern and support.
I finally have my first appointment with the ALS speech therapist next week, and my neuro has advised me to seek out voice banking.
My question is, does this sound appropriate?
Do I sit and wait for more points to accumulate, or a ‘dirty’ EMG?
Is this how the diagnostic process, works?
Thanks!
 
Frs is not part of diagnostic criteria. The diagnostic criteria are an emg that has specific abnormalities characteristic of ALS, clinical findings and tests that rule out other diseases. If you don’t have all three you do not meet criteria and should not really be diagnosed with ALS. my clinic strongly adheres to this and they are one of the leading ALS centers. So yes your doctor is right in not calling this.
voice banking can’t hurt
 
Hi, Nikki- thanks for your response.
Excuse my ignorance, but what is frs?
Thanks for clarifying.
I have abnormal clinical findings, and documented symptoms, but nothing else, as of yet.
I’ll just continue to try and take care of myself, and live life, in the meantime!
 
The points you talked about. to be specific als functional rating scale revised
 
Ahh okay, thank you.
I also forget to mention, I did have significant testing, to rule out mimics. Everything has been negative. Unfortunately 😞
 
Status
Not open for further replies.
Back
Top