Recently diagnosed Bulbar Onset Motor Neuron Disease
- Thread starter Serenity
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- DX ALS-FTD
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- 03/2025
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Northwestern downtown Chicago has an amazing als clinic and are affiliated with Les Turner ALS foundation as well. It a bit of a trip but if it’s in network they have expertise at play and they are very good.
serenity My als started all umn like yours then the speech hit then walking .. have you had a single fiber emg yet they usually do an repetitive nerve stimulation to look at nmj? Should be doable local too and covered. That would show distinct things leading to considering autoimmune like mg…. Mine even trialed the mg drug after the sfemg found stuff just to prove the point it wasn’t mg (I was double sero negative)… I will say u need a skilled neuro who knows sfemg vs regular emg
Btw Did they draw a NFL on you?
I wouldn’t recommend the spinal tap as they suck and won’t show much lmn which is the gap.
serenity My als started all umn like yours then the speech hit then walking .. have you had a single fiber emg yet they usually do an repetitive nerve stimulation to look at nmj? Should be doable local too and covered. That would show distinct things leading to considering autoimmune like mg…. Mine even trialed the mg drug after the sfemg found stuff just to prove the point it wasn’t mg (I was double sero negative)… I will say u need a skilled neuro who knows sfemg vs regular emg
Btw Did they draw a NFL on you?
I wouldn’t recommend the spinal tap as they suck and won’t show much lmn which is the gap.
Serenity
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- 02/2025
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Hello, unfortunately my insurance does not cover Northwestern in Chicago either...
And Drewidia, I did have an EMG/NCS test, but I don't know that it was a single fiber EMG, I could check with my Nuerologist... I had attached a copy of that earlier in this thread.
And I did have the Nuerofilament test. It came in at 64, and was told for someone my age, under 20 is normal, so I am a little high. I'm not sure what # ALS patients typically come in at...
I emailed a message too, to someone that had contacted me from the ALS Association after my first multidisciplinary clinic, to get her thoughts on things, as far as continuing to pursue a 2nd opinion at this point.
And thanks for your opinion on the Spinal tap. I'm sure that is very unpleasant.
Sorry for your diagnosis as well. We're all in this together, and this Forum is such a wonderful group of people. One day at a time....
And Drewidia, I did have an EMG/NCS test, but I don't know that it was a single fiber EMG, I could check with my Nuerologist... I had attached a copy of that earlier in this thread.
And I did have the Nuerofilament test. It came in at 64, and was told for someone my age, under 20 is normal, so I am a little high. I'm not sure what # ALS patients typically come in at...
I emailed a message too, to someone that had contacted me from the ALS Association after my first multidisciplinary clinic, to get her thoughts on things, as far as continuing to pursue a 2nd opinion at this point.
And thanks for your opinion on the Spinal tap. I'm sure that is very unpleasant.
Sorry for your diagnosis as well. We're all in this together, and this Forum is such a wonderful group of people. One day at a time....
- Joined
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- DX ALS-FTD
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- 03/2025
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- Chicago
Yep all in this together. One thing I am thankful for is there is a lot of focus and resources on MND/ALS and there is a community out there for support.
An easy "test for autoimmune" is they can always trial you like me on the drug and just be careful, these med also suck and only trial to see if it provides some benefit (unlikely). The result of the NFL itself is suggestive it ain't autoimmune too and what's important isn't so much the actual >20 value but actually the trend - meaning you'll get a repeat. For me mine doubled in 9 months.
The EMG you had wasn't SFEMG - If you read the EMG - it mentions it was a "normal" needle - the SFEMG basically isolates pairs and it's a very specific needle type/test and in my case 1.5 hours of multiple docs poking my eyebrow, and getting very excited to find stuff (which was mildly entertaining i guess). I think the point to tell the neuro docs is getting another datapoint on LMN signs and if it's bulbar - SFEMG may be more sensitive to that. The neurologist who saw me at the muscle clinic knew what I had from right from the start and I trust what they have found given it lines up with everything.
I wouldn't discourage you (or anyone) to drive the 2nd opinions, but I would also suggest, you may get to a point, like me, where it's like - is it really that important to keep digging vs just living life - knowing the care team around me and just "keep moving forward" (ignore the fact that's my FTD "talking"). The distinction on MND (PLS) vs full ALS will happen anyway over time, clinically they saw the UMN part and the LMN symptoms are there, the EMGs just codify what they already saw clinically (and is further documentation).
Last point, Voice Banking - do it now, I waited a bit to long and relied on them reconstructing from voicemails, videos etc...
Prayers and happy thoughts.
An easy "test for autoimmune" is they can always trial you like me on the drug and just be careful, these med also suck and only trial to see if it provides some benefit (unlikely). The result of the NFL itself is suggestive it ain't autoimmune too and what's important isn't so much the actual >20 value but actually the trend - meaning you'll get a repeat. For me mine doubled in 9 months.
The EMG you had wasn't SFEMG - If you read the EMG - it mentions it was a "normal" needle - the SFEMG basically isolates pairs and it's a very specific needle type/test and in my case 1.5 hours of multiple docs poking my eyebrow, and getting very excited to find stuff (which was mildly entertaining i guess). I think the point to tell the neuro docs is getting another datapoint on LMN signs and if it's bulbar - SFEMG may be more sensitive to that. The neurologist who saw me at the muscle clinic knew what I had from right from the start and I trust what they have found given it lines up with everything.
I wouldn't discourage you (or anyone) to drive the 2nd opinions, but I would also suggest, you may get to a point, like me, where it's like - is it really that important to keep digging vs just living life - knowing the care team around me and just "keep moving forward" (ignore the fact that's my FTD "talking"). The distinction on MND (PLS) vs full ALS will happen anyway over time, clinically they saw the UMN part and the LMN symptoms are there, the EMGs just codify what they already saw clinically (and is further documentation).
Last point, Voice Banking - do it now, I waited a bit to long and relied on them reconstructing from voicemails, videos etc...
Prayers and happy thoughts.
Serenity
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- 45
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- DX MND
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- 02/2025
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- US
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- WI
Thank you for such sound advice.
And unfortunately my voice is too far gone to do voice banking, and I have no past recordings really of it, other then the few second recording on my cell phone...
Prayers and happy thoughts to you as well.
And unfortunately my voice is too far gone to do voice banking, and I have no past recordings really of it, other then the few second recording on my cell phone...
Prayers and happy thoughts to you as well.
Serenity
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- DX MND
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- 02/2025
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So, after messaging with my Nuerologist, apparently the 2 clinics my insurance company mentioned for a 2nd opinion, neither has a Nuerologist that is a "Board Certified" Nueromuscular Specialist, so she has referred me to a colleague at UW Hospital in Madison that is ( she is as well ), and he will see me June 24th, so glad he can get me in that quickly. My sister will come with me to be my voice, and I'll have my notebook of questions (and writing board to communicate 
).
Again, was really hoping to get into Mayo, but will see how it goes, and my Nuerologist also mentioned if I still have concerns, she'd help me file an appeal with my insurance company...
Just feel I need to at least get this 2nd opinion, as is recommended, and if nothing else, to get another perspective on things, and accept what it is.
Hope everyone is doing well this evening.
). Again, was really hoping to get into Mayo, but will see how it goes, and my Nuerologist also mentioned if I still have concerns, she'd help me file an appeal with my insurance company...
Just feel I need to at least get this 2nd opinion, as is recommended, and if nothing else, to get another perspective on things, and accept what it is.
Hope everyone is doing well this evening.
Nikki J
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Good luck. Let us know how it goes.
It sounds like your neurologist over all did not think those two doctors were a good fit for you I will note for others the absence of board certification in neuromuscular medicine alone should not rule out a particular clinician. New clinicians might not have had time to take it yet , some might have done neurophysiology instead and older clinicians might not have gone back to take it. It only became available in 2008. My own neurologist is world renowned and she doesn’t have it
It sounds like your neurologist over all did not think those two doctors were a good fit for you I will note for others the absence of board certification in neuromuscular medicine alone should not rule out a particular clinician. New clinicians might not have had time to take it yet , some might have done neurophysiology instead and older clinicians might not have gone back to take it. It only became available in 2008. My own neurologist is world renowned and she doesn’t have it
Serenity
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Will do, thanks Nikki.
And thank you for your added clarification on the " board certification ". I wasn't exactly sure on that, when my Nuerologist had that opinion on the other two locations.
Have a good day !
And thank you for your added clarification on the " board certification ". I wasn't exactly sure on that, when my Nuerologist had that opinion on the other two locations.
Have a good day !
Serenity
Active member
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- DX MND
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- 02/2025
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So, I had my 2nd opinion yesterday with a 2nd Nueromuscular Specialist, and to keep it brief, his notes state " I agree that the patient is suffering from a Motor Nueron Disease. I do not see frank LMN involvement at this time. I am hopeful that given the modest NFL elevation and her lack of clear LMN findings at this point, portends a more slow progressive motor nueron disease.
He mentioned it important to continue with the Multidisciplinary clinic, esp. to keep an eye on my swallowing and breathing, and I understand nothing can be done for my speach loss. We also discussed further that my swallowing abilities will continue to worsen, and the need for a feeding tube in the near future is likely.
So, I will continue taking things one day at a time. Hope everyone has a good evening.
He mentioned it important to continue with the Multidisciplinary clinic, esp. to keep an eye on my swallowing and breathing, and I understand nothing can be done for my speach loss. We also discussed further that my swallowing abilities will continue to worsen, and the need for a feeding tube in the near future is likely.
So, I will continue taking things one day at a time. Hope everyone has a good evening.
