Sorry I am back here, but want to share recent updates, thank you

[ConcernedTeen]

Hello all. I have managed to keep ALS out of my mind for about the last 3 years, but recent symptoms unfortunately have me back here.

In March 2018, I developed fasciculations that were widespread but concentrated on right side.
In June 2018, I had confirmed slight distill weakness of right ring and middle finger extension (unable to extend all the way), confirmed by neuro. I had MRI, and thorough EMG of the area which were both normal and dismissed.


June 2020, I developed consistent, 24/7 shortness of breath. I had EMG of diaphragm which was normal. In the EMG, I had one abnormality in T Paraspinal: 1 Fib. Referred to Mayo Clinic Neurology. At Mayo, thorough EMG done with normal results. Dismissed. Went to pulmonary, PFT showed asmathic range, given inhalers, did not really help much.


July 2023. Fast forward 3 years, go back to pulmonary as breathing is worse. PFT shows asmathic range still, no relief from inhalers.

May 2025 (Today, 25 years of age). Past 3 months, breathing detonating, right hand weakness progress for first time in 7 years (slight loss of dexterity, making typing slower), and for the first time, weakness of right leg (slight, but definitely present ~ fatigue after walking and slight difficulty walking on toes (confirmed by PCP).

Next steps, referred to nuro for first time in 5 years and extremely worried. I tried to leave this behind but the symptoms keep finding me. Anyways, I read some medical papers on "Dyspnea-Fasciculation Syndrome", which is basically another term for respiratory onset. I understand that this is extremely extremely rare, but I will say that symptoms such as relatively preserved limb function, widespread fasciculations, and respiratory weakness do sound frighteningly similar to whatever I have going on.

For the past 3 years, I have been working full time as an engineer and been able to fulfill my duties until past couple weeks.. breathing is so labored it's hard to talk in meetings and always have labored breathing, without relief from inhaler.

Does this sound like it could be a presentation of Respiratory Onset?

 

[lgelb]

No.

PFTs that show asthma are not showing ALS. There are oral meds that help control asthma, so I would go to an allergist/asthma specialist (a lot of asthma is really just another manifestation of or worsened by allergies) for evaluation.

If you are wheezing in sleep, when our breathing is typically the most compromised, that could certainly show up as fatigue during the day.

 

[ConcernedTeen]

Thank you for the reply. I would like to clarify that I don't have any cough or wheezing, or any recent infection. Just a non-stop laborious breathing effort. I have tried bronco dilators and other inhaler and found no relief from them unfortunately.


I'm just wondering if 7 years of symptoms is enough to clear me, despite slowly progressing. But, I have not had EMG in 5 years so I am trying to schedule another one soon but appointments are booked for months.

 

[ShiftKicker]

Hello and so sorry that ALS continues to be a focus for you after so many years. I refer you back to what was said in your last thread Progressively Worse Symptoms 3 years ago, no one is telling you nothing is wrong, only that it is not the pattern of symptoms for ALS, for so many reasons, including the enormous length of time you have been experiencing issues. You must continue to work with your doctors to track down causes.

 

[ConcernedTeen]

Thank you. Yes I am working with my doctors to triage this now. My primary is very concerned with my very low Peak Flow and decline since last PFT, and not getting relief from inhalers. I have just been referred to ALS Specialist to consider the possibility of a MND, since it has been almost 5 years since last Neuro evaluation. My breathing and strength have really declined in the past 3 months. I am strongly considering going on sick leave if it get's any worse.

I just had an MRI that was normal.

Praying every day that this is not the case. It's becoming too difficult to juggle a life on top of this.