General question regarding ALS symptoms

[IonIon]

Hello all,

I am trying to find more specific answers to question regarding ALS involvement.
First of all I am not new to ALS journey. I have been having symptoms for some quite some time now.

Nov 2022:
- Fasciculations all over the body mainly in calves
Dec 2022:
- EMG done, just some fasciculations on S1 nerve root, minimal chronic neurogenic itinerary seen on FDI, biceps, extensor carpi brevis, no arguments for ALS, come back in 3-6 months.
March 2023:
- Motor Evoked Potential done with values for lower limbs lower then 17 m/s and for upper limbs 9 m/s. No argument for ALS.
April 2023:
- New EMG because of persistent fasciculations all over the body mainly in calves. EMG was clean but on S1 root +1 fasciculations.
June 2023:
- NFL serum via Mayo Clinic, Simoa used, value was 4.5 pg/ml, adjusted for age and BMI ( 35 ), sNFL Z-score was 0.05, again another analysis that would provide a clue against neurodegenerative disease.
July/August 2023:
- Cramping in odd places, abdominal area, triceps, calves, quads. Multiple neuro exams ( strength and pyramidal reflexes done ) all ok.
October 2023:
- Another EMG done with the top neuro in my country, he tested 4 muscle where he identified +1 fasciculation in 2 of them. BFS dx. He was really uninterested about my concerns, perhaps because he sees all kind of nasty stuff al the time, I do not know..
November 2023:
- Fasciculations start to loosen up in my calves but the move in my tongue and face. Myoclonus present, mainly at night before sleep, but during the day also.
December 2023:
- Starting having difficulties respiration when laying on my back on bed. Like gasping for air. In these moments SP02 is 85% for 30s-60s then goes up to 93%-94% where it stays there.
- Last EMG done where mentalis, trapezoid & glossus muscle were tested among others. From 8 muscles tested, half of them have been found with fasciculations. The neuro is not concern and tells me it's BFS and she has abandon the will to convince patience that fasciculations are from a benign cause.
- Spirometry done FVC 86, FEV-1 91, pneumologist says it's normal you're just fat.
- ENT visit looks inside my throat, says soft palate and tongue are functioning normal but due to my level of fat around the neck I breathe and swallow a bit more difficult.
January 2024:
- NFL test done again to see progression, Simoa used, different lab in Germany, the value was 3.07, with a sNFL Z-score of -1.31. Maybe because I have gained weight since summer the value dropped ? Can't find another explanation..

1. Now regarding my anxiety I have been controlling it much better in the last month but for the last few days I have new symptoms that maybe some of the more experienced members of this forum can explain them to me. I am having excessive salivation that causes me to always swallow, like in a minute I will swallow 8-10 times, the worst part being in the bed I can't relax my tongue it's always in action pushing the liquid back in my throat. Should I be worried about this ? Some of the post on this forum in the past have said that they started with Bulbar ALS like this. An abstract note here is that I can swallow just fine especially thin liquids like water, in fact I did a swallow test at home and I can drink 200 ml of water in just 2 seconds.
2. Regarding speech and I am really sorry for putting a stupid question like this but nobody answered me: For people who are slurring the words in Bulbar ALS is there a difference when you read the text vs speaking freely ? I mean if someone has problems, he has problems regarding if he reads it or not, right ?
3. Another concerning problem it's the myoclonus. I move my mouth involuntarily. Like biting. Like puffing air. This is a scary one as I never have this. Is this related to bulbar ALS ? Weakness of muscles in the face/mouth ? I don't get it since the EMG was without PSW and/or Fibs in bulbar muscles. Could be a upper neuron motor sign?
4. For the last 3 months when I see something sad, it upsets me and makes me wanna cry. Of course I never cry because I am fighting the feeling but the teary eyes are just over the corner. IT"S exhausting ! Could this be PBA? If I had it shouldn't my MRI and NFL values be higher ?

I like to add one more thing to the mix of problems that I have. 2 months before the debut of my fasciculations I was on Ciprofloxacin for 2 weeks. IT was very hard, I have had deep leg pain, light sensitivity and later on easy snappiness. Furthermore in November 2023 when my fasciculations started to loosen up a bit I had to go again 2 weeks on Cipro and after finishing that course of abx, the fasciculations came back with a vengeance, as shown on EMG too. Could these abx have a potential neuro toxic mechanism against the peripheral nervous system ? Did some of you encounter these type of problems before ?

Thank you for reading my story.

 

[lgelb]

Cipro can definitely cause a host of symptoms, as can all the antibiotics. An underlying infection can be disruptive as well.

If you are obese and having difficulty breathing while lying down, you should have a sleep study.

You are correct that slurring is slurring no matter what the text. And now that you have self-tested your swallowing, nothing to worry about unless/until someone notes differences in your speech.

Worrying about PBA and UMN signs seems over the top given your reassuring EMGs over time. Excess saliva can be a sign of allergies or, again, sleep apnea that the sleep study tests for.

I have no idea why you are tracking neurofilament levels when there is no evidence that you have a neurodegenerative disorder. It seems to me that will only feed your anxiety.

I would seek more/better treatment for your anxiety and get a sleep study. And look to lose weight (perhaps starting with just a big more daily movement ) for many health reasons, both physical and mental.