Currently Undergoing Tests For ALS

[CatM]

First off, I'd like to thank you for allowing access to your community and for being willing to answer questions.

I'll get right to it. I'm a 66 yr old female cancer survivor, who started having pitch changes to my voice 3 years ago which I attributed to age. I developed monotone slurred speech a year ago that my then primary physician became very concerned about. Stroke was ruled out as has been brain tumor mets. She referred me to a neurologist. Neurologist told me I have a motor neuron disease.

Primary left the practice which required acquisition of a new primary. New primary referred me to a second neurologist who performed an EEG, ambulatory EEG. Results were abnormal, as I have a history of seizure activity. He then ordered a swallow test, which I'm unable to do because I have severe reaction to contrast.

Primary physician has ruled out Myasthenia Gravis and has ordered an EMG. She sent me to speech therapy for evaluation, where I found out I can no longer curl the tip of my tongue upward. I'm mistaken for being drunken all the time, with my speech. It takes me so long to get words out, people walk off. It exhausts me to speak, especially when I have to for more than three sentences and I end up being unintelligible by the time I'm finished speaking. I've been diagnosed as having dystrythmia by my primary and speech therapist.

My balance is off and I've had several nasty falls, another last week, two days before I was to have the EMG. I'm rescheduling the test asap.

My question is, does ALS present in this fashion?
Thank you very much for your time.

 

[KimT]

If it's ALS, it appears to be very slow progressing. ALS presents differently and the only way to know if ALS is on the table is to have the EMG and any other tests your doctors order.

I'm so sorry you fell. Please be careful. I hope you can get the EMG rescheduled soon. Who is doing your EMG?

 

[Nikki J]

Neuro 1 said MND? I gather neuro 2 either disagreed or at least said it isn’t clear we need tests? As Kim says be careful. Falls are dangerous anyway and can be devastating to someone with ALS

 

[CatM]

Thank you for replying, Kim and Nikki.

If in fact it is ALS, it at least would be good to know its slow progressing. I neglected to mention that I'm having difficulties with swallowing, during which I have choking and aspiration episodes. They appear to be picking up in frequency, as well as intensity. I used to have the choking only in my sleep, whereupon I would awake suddenly experiencing 'divers reflex' (couldn't breath in or out for a few seconds), now I have it in wakefulness as well. I'm either experiencing excess saliva or can't keep it in my mouth when I speak. I now spit and drool.

Thanks for you concern about the fall. I'll reschedule the EMG immediately. After glancing through your forum, I now realize the importance of it.

A gal by the name of Megan Reedinsky, in Neurology Diagnostics. I may have that last name wrong, as I can't read my own writing.

Again, thank you Kim.


Nikki J

Nero 1 told me I have a motor neuron disease, after the initial examination.
Neuro 1 is at a teaching hospital, head of the neurology department, and is a professor as well. He scheduled the head CT at the university itself, instead of hospital or imaging facilities. I didn't feel comfortable with this, as well as my insurance wouldn't cover the test unless it was done at hospital or imaging center. I've never in all my 35 years of fighting two cancers and other serious medical problems, heard of this. I felt I'd receive better care somewhere else.

Neuro 2 ordered the head scan to be done in a clinic facility.

Thanks for your concern about the falls Nikki, and again for your reply. I usually have something nearby with which to steady or catch myself from going completely down, but had nothing nearby in the back yard.

 

[lgelb]

How were stroke and brain mets ruled out a year ago? You do not mention a brain MRI.

To answer your question, this would be a very atypical ALS onset, which gives me hope that it's something else. There are still many possibilities on the table.

I would track your sleep with a wearable, share the data, and ask about a sleep study and/or PFTs if/ as warranted.

 

[CatM]

Thank you for responding, Igelb. I'm sorry I wasn't clear about the rule out of stroke and brain mets. Neurologist and Primary ruled them out via most recent head CT performed in February of this year. The CT did show noted changes in comparison with one performed in 2022. Loss of white matter (volume loss) and microvascular disease. I don't have any other symptoms of stroke, as well. I can't have an MRI.

I did find an atypical case study during my research, and my symptoms match. I do hope as well that it's not ALS, and I hope its not the lymphoma now attacking my central nervous system, or brain mets that they've missed. I realize they're somewhat limited with diagnoses as I can't have an MRI however, it puzzles me why my oncologist isn't including my head in the most recent ordered PET scan.

Unfortunately I don't have a wearable. It's obvious now, that at times I can't hold saliva in my mouth and my speech is worsening. I can no longer cough deeply, it appears to be weak at times as well. My oxygen saturation has dropped within the past four months. I'm experiencing rapid weight loss too. I've mentioned the extreme muscle cramps within the past couple of years to my primary's and they had no response. I just chalked it up to dehydration.

I'm rescheduled for an EMG the 21st of May, that's the soonest they can get me in again, and they have no cancellation list. They have only two neurologists to perform the test, they're all booked up until then, I'm told. I'm scheduled for an appointment with my neurologist the 25th of this month. Perhaps he can speed things up with the test, being that he's one of the two neurologists.
Mod note quote removed. Please don’t. It makes threads longer and some of us use alternate methods to scroll ( like eyes)

 

[CatM]

My apologies, I'll make my responses and posts more brief.

 

[Nikki J]

Just don’t quote and it will be fine

 

[CatM]

Are any of you familiar with the CK (creatine kinace) blood test? My primary ordered one on me, and she tells me the results "almost entirely rules out any muscle based problems, such as ALS, or MD". Normal range is 22-269, and my result is 44. She says she still wants the EMG, but feels the muscle biopsy isn't necessary now.
She's calling my oncologist to tell him she wants my brain included in the PET scan. I can't open my left eyelid now, when my eyes are closed. I have to open the right one first, before the left one will open.
Should I trust the CK test result?
Thanks for your time.

 

[Nikki J]

It is a really nonspecific test. A subset of PALS do have a slightly elevated CK but not all ( and there are so many reasons for it to be elevated that an elevation without a diagnosis isn’t a red flag anyway). Yours is super low though

Also you are still getting the emg. The muscle biopsy was really for myopathy which the CK did rule out. It isn’t something commonly used in an ALS workup

Eyelid issues don’t sound like ALS. Exactly how was MG ruled out?

 

[CatM]

Thanks Nikki, for responding. I apparently got it backwards about the low and high CK results because you'd know, after all. I thought low end on the scale was cause for alarm. She ruled MD out with the CK test results.
Thanks for clearing things up for me!

 

[Nikki J]

I asked how they ruled out MG not MD

 

[CatM]

My apologies, primary did a blood test to rule out MG.

 

[Nikki J]

Even if your testing included reflex to MuSK antibodies there is about 5% of MG that will be seronegative. If the standard emg doesn’t give an answer ask your neuro if you need a single fiber one

 

[CatM]

Thanks Nikki, I'll make note of the single fiber one.