Respiratory Symptoms/concerns

[MaisiePollock]

Good Afternoon
Thank you for accepting me into this group and allowing me a place to express my concerns in regards to myself.

I’ve had twitching in muscle for around 4 years now, legs, arms, back. However whenever I’ve been to the GP for my concerns manual muscle testing has been carried out and there’s been no concerns raised in regards to my strength (resistance testing is what’s been done on me). I had an emg around 4 years ago aswell and there were no concerns. To add, my right leg looks thinner in my calf (I get a lot of twitches in my right leg) but when measured it measures the same and I’m able to raise on tip toes, heel walk.

However the reason I am here is because since 2021 I’ve had issues with my breathing, finding I’m really out of breath and this has continued throughout 2022 but nothing that has stopped me doing anything. Although, as of 2.5 weeks ago I’ve had an intense feeling of not being able to get any breath, constant air hunger, constant discomfort in my chest whereby it feels restricted (no matter what I do or what position I am in) I am constantly sighing and force yawning to get air in but no breath I take is fulfilled due to the restriction feeling. It’s constant every day, 24:7. I went to my GP with concerns, she again tested my strength which she didn’t have concerns with and she checked my oxygen levels which range from 95-97 and listened to my lungs which were clear. I can’t lay, stand or sit without being uncomfortable and constantly reaching for air without it being fulfilled. My question is, does this sound like ALS symptoms/respiratory weakness?

I often feel unsteady on my legs but again, my GP had no concerns with my strength.
To add my grandmother also had MND, bulbar onset (I don’t know if this information is useful).

I appreciate no one can diagnose here but I am just looking for some advice/reassurance in regards to these respiratory symptoms I am having constantly every single day/24.7

Thank you for your time reading this.

X

I forgot to add to my post that I am constant force yawning to get a deep breath in but it’s never fulfilled. I’m yawning (forcely) every 5-10 minutes to get that breath in. I’m also not sleeping well, tossing and turning during the night due to the feeling I have.

No one has noticed a difference in my speech.

Apologies, I didn’t add this to my original post.

I would be grateful for any response.

 

[lgelb]

I would ask about pulmonary function testing. Meanwhile, a wearable can assess your average O2, pulse and movement during sleep, and the quality of your sleep cycles. That would bring more facts to the table in advance of PFTs and possibly justify a sleep study. I would also ask your GP for an ECG to confirm that these issues aren't related to your heart.

 

[MaisiePollock]

Thank you for your reply.

I had an ecg when I went to a&e and it was normal.

Can I ask does this sound like respiratory symptoms that occur in ALS?

 

[lgelb]

No, it does not. Did they do a chest X-ray?

 

[MaisiePollock]

No chest xray.

Can I ask on what basis this doesn’t sound like ALS? I’m worried sick. I can feel it day and night, I’m getting no relief what so ever. Every breath I can is not fulfilled and so uncomfortable, it’s so hard to expand my chest/stomach to get breath in.

 

[lgelb]

I'd ask about a chest X-ray -- there can be unappreciated injuries, tumors, fibrosis, etc. even if there's no history of smoking or vaping.

ALS respiratory impairment just doesn't begin with the level of restriction 24/7 without regard to position as you describe, least of all 3y in from initial shortness of breath.

I am presuming you are not exposed to environmental toxins at home or work. But if you are, that is certainly something to share with your team.

 

[MaisiePollock]

Thank you.

So my symptoms don’t sound anything like ALS?
I also keep getting as of recent a feeling like I’m going to choke, with nothing there, a feeling in my throat that there’s saliva or a ball like sensation that I keep swallowing.

 

[MaisiePollock]

Sorry to add,
It didn’t just start like this … I have twitching in my arm (left mainly) and right leg for quite some time but every time the GP has done strength tests they have been normal. When I say some time, I mean it started subtly around 2018 but has become more prominent. I started feeling as though I couldn’t take deep fulfilled breaths around 2021 but it was something that would pass, but as of now, I am in constant discomfort, constant air hunger where I’m yawning every 5-10 minutes to get a breath in but it’s never fulfilled. I have a horrible feeling in my chest of tightness and twinges. Breathing doesn’t feel easier if I stand, sit or lay. Then along with this, which is extremely frightening, I feel like I can’t swallow (although I do). And unsteadiness on my legs but no weakness detected manual muscle testing.

I’m at a loss x

 

[Nikki J]

As Laurie said you should have a chest xray. Also pulmonary function testing which should provide information as to the source of your breathing issues as she said.

Aside from your description of it I have never encountered a pals with symptomatic respiratory involvement who three years later was not at least bipap dependent if not vented or dead

 

[MaisiePollock]

As I said, it hasn’t always been like this. It’s fluctuated since 2021 and got increasingly worse within the last 3 weeks. I also have a feeling in my swallowing where I feel like I need to keep swallowing, something is there in my throat but there isn’t and like I’m going to choke on saliva that isn’t there.

I have ate for 2.5 weeks properly in fear this could be ALS.

 

[lgelb]

We understand that you did not mean everything was the same for 3y. The point is that onset of respiratory problems in ALS does not present over the time period you describe, nor do they come and go. Once the motor neurons die in ALS, they are dead forever.

Your GP can make a start at assessing your swallowing, and refer you to an ENT or SLP if needed. Meanwhile, it is often helpful to avoid plain water, drink slowly before and after eating, and avoid foods and liquids that are harder for you to process.

Post-nasal drip secondary to allergies and/or dry air can also play a role, so you could explore trying a saline spray, Neti pot, or nasal steroid as well.

If you had limb onset, there would be more than twitching and your GP would have appreciated a loss in strength.

If you had respiratory onset, you would have lost the ability to maintain O2/CO2 balance without a machine to help, by this time.

So there is literally no reason to believe that you have ALS. I encourage you to redirect the energy you are using on being afraid of ALS to a better understanding of whatever health issues you can actually address.

 

[MaisiePollock]

Apologies if I sounded rude, that was not my intention.

What I mean is, issues with breathing began in 2021 and as of now they have become constant and really distressing to the point I can’t see how it’s not caused by ALS. Im also dizzy upon standing too which I don’t know if it’s related to the respiratory symptoms I am having. Especially with the throat/swallowing issues I am having. When I say issues with my throat, I haven’t choked or coughed when eating or drinking but when I do it feels odd going down and even when I’m not drinking or eating it feels like my throat is ‘tight’ or like I’m going to choke on nothing.

During manual muscle testing, my GP hasn’t assessed a decline in strength. She also made me tip toe walk, heel walk and heel to toe walk. She didn’t address any concerns in that area.

I haven’t had CO2 checked. My o2 level is the only thing that has been checked which ranges from 95-97 most days (I have one at home).

I know you are not a doctor but can I just clarify, is the description I have given regarding my breathing and throat/swallowing sounding anything like what occurs in ALS?

I appreciate your response and taking your time out to speak to me.

 

[lgelb]

Again, no, there is no resemblance.

The pulmonary testing will assess the parameters that determine CO2, but you are not reporting any reason to think you are not capable of adequate air exchange (in which O2 is taken in and CO2 is expelled).

If you look at your thread, there is a pretty fair list of "to-do's" and "to-tries" here. Accordingly, closing it so you can get to work on what can help. Please do not start another unless you are diagnosed with an MND.