Bulbar Onset?

[Hmy1972]

I will try to be brief. Around October of 2021 I began slurring my words after only one drink of alcohol. I thought, WOAH, I can't handle alcohol anymore and quit drinking altogether.

Starting in Feb/March 2022 I began choking when I was swallowing certain foods. I have a history of vocal cord polyps so I assumed they returned and were impinging on my ability to swallow. I made an appointment with an ENT. They scheduled a swallow study. It showed some difficulties completely swallowing my food bolus. The SLP also noticed fasciculations in my tongue. Luckily she worked for a Neurologist in town whom she got me in to see relatively quickly (about two months later).

Prior to this appointment with the Neuro I began choking randomly. When I was eating, when I was sleeping, when I tried to swallow my saliva. I also began slurring my words daily. It was worse in the evenings when I was tired. But present at all times.

The Neuro ordered a slew of blood tests and an MRI. The blood tests came back negative for any disease process that could be causing my symptoms. He ordered a NCS, EMG and since the MRI came back with a few white matter lesions the Neuro sent me to a MS Neuro specialist. They performed a lumbar puncture. NO Obands were present. The MS Specialist stated she did not believe my issues were from MS. Although there were lesions they were not in the location that would be causing my issues.

In the meantime the EMG and NCS were performed. The EMG results were minimally abnormal. They were at a loss. They referred me to Mayo Clinic. I have attached the NCS and EMG results from Mayo. Mayo also conducted a Neurofilament Light chain serum test. The results were 54.4 (should be less than 20.8).

I also have begun to experience muscle spasms in both forearms that cause some of my fingers to become rigid and flex towards my palms. I have leg spasms and spasms in my feet at night. I also have a weird rolling type of muscle spasm in the region of my diaphragm.

Notes from EMG
CLINICAL INTERPRETATION: Abnormal study. The findings are subtle and possibly consistent with a
chronic neurogenic process affecting the anterior horn cells or their axons in a patchy
distribution primarily involving the bulbar and cervical levels. A follow-up study in 3-6 months
may be useful to further assess for progression. There is no evidence of a myopathy or
neuromuscular junction transmission defect on the current study.

Any insight would be greatly appreciated.

 

[Nikki J]

You clearly have something going on. The nfl is nonspecific but says you probably have some kind of neurodegenerative process. It doesn’t say what though ALS Ms dementia and more are all possible causes. Also though recent head trauma. If the last it will come back down.

your symptoms are concerning so is your emg. None of these seem diagnostic though What did Mayo say? They would be the ones to add it all up for you.

I am sorry you are going through this

 

[Hmy1972]

Nikki, thank you so much for your response. I know you all see SOOO many of these types of posts. I hated to inundate you all with yet another. I leave for Mayo on 4/18, I will update with any information I receive.

You are wonderful people and I appreciate your assistance.

 

[Nikki J]

Do let us know how it goes. Make sure you have written down everything you want to say and ask. a timeline and specific examples of what you can’t do if this is your first time with this clinician.

if you can bring someone with you to take notes it is very helpful. Visits are overwhelming as you know.

good luck

 

[lgelb]

You can also ask if it's OK to record the discussion on your phone.

 

[Hmy1972]

Strange visit to Mayo. Did not see neuro. SLP, otolaryngology surgeon and Endo were sent Instead. I have a ton of data from tests but nothing definite. I saw the attached ICD 10 code, so perhaps ALS is off the table for now since it’s ICD 10 code is 12.21?

At one point the SLP and Surgeon were tag teaming a visit and asked. “Did Dr. Oskarsson tell you why he sent you to us?” I told them, for a speech evaluation ?! I thought that was an interesting question. My speech eval came back with spastic possibly spastic/flaccid dysarthria. Waiting for follow up visit on May 8. Thoughts?

 

[Nikki J]

Motor neuron disease other is a somewhat non specific code. It might mean they think you have something else in the mnd familyor it might be they just haven’t called it yet. The lp provider would not be the person to call ALS first as she is not your neurologist. It could be that your records say ? aLS or ? Mnd but she has to put a diagnosis code so reasonably enough chose that

I am sorry you didn’t get an answer and have to prepare yourself again

 

[Hmy1972]

Thank you. I found it strange that it was on the LP discharge/ treatment notes also. The waiting is the hardest. I never knew I knew so little about the testing that SLPs conduct until I just read my results, confusing. I will update when I get a clearer answer, I hope