Looking for answers & support

[Torrence Wade]

2015ish, after a flu season I randomly got the flu and it seemed like a sore throat I could never kick, till this day. I also started to have shortness of breath. I just finished being a college athlete so, I thought I was just out of shape. Tried to get back in shape and the shortness of breath never seemed to go away. So I learned to live with it.

2016-2019: Shortness of breath still consistent. I was still able to workout, but I could only push my body so far. Saw a few pulmonologists they gave me inhalers, to no avail I was still dealing the same symptoms. In addition, whenever I workout or do anything physically extensive my muscles tended to get tired fairly quickly. Continued to see doctors, nobody had any answers.

2020 - Middle of the year, I randomly lose the ability to burp on command. Say a GI doctor, had 2 endoscopies all clear, modified swallowing test, all clear. Later in the year, had a blood clot in my arm without reason (all testing came back negative), never regained the ability to burp fully & everything else above remained. My arm also hasn’t ever fully recovered (feeling wise) from the clot.

Summer 2020 - Now: every so many months I got thru a few weeks where it feels like I’m gasping for air more regularly. It ends up going away, but when it comes it’s on strong for about 2-3 weeks. Then back to my normal baseline shortness of breath/muscle fatigue.

2021 - Countless tests on my heart & lungs everything continues to come back clear. I schedule a cath stress test to have in October.

August - I’m out on a date with my wife and my leg cramps up. Stretches won’t do anything. Has been the same since, the cramps come and go, but there’s a bad pain in my buttocks that’s remained the same. Hurts to put my foot on hard surfaces, etc.
Sep - everything remains about the same. Except toward the end of Sep, widespread twitching becomes a thing. I try to think about it, read it could be benign, my doctor gives me Gabapentin etc. Go to the ER a couple times, all the MRI’s come back clean, etc.

October - I start having to clear my throat pretty frequently. Trying Claritin & Flonase, the jury is still out it’s been a couple weeks. Food gets stuck in my throat frequently, can still swallow but takes a few tries for it to go down. Vocal chords feel strained multiple times a day.

I have my stress test, the cardiologist says “basically your muscle aren’t retaining oxygen.” I get on the bike for the test, and then it confirms that. He brings up ALS, and refers me to an ALS Specialist within the same day. I go see her, pass the the clinical strength exam, and she tells me “YOU DONT HAVE ALS. We will run other tests, and EMG soon, etc. but ‘I’m not worried about ALS.” Which was comforting, very comforting.

I message the cardiologist of her bias, he’s not so sure and is going to do more follow up with her. (As if all of this isn’t traumatic enough)

Meanwhile, muscles still fatigue. Clearing my throat very often. Have absolute insomnia, (because who wouldn’t), and am just said. Twitching is still pertinent, but in addition my body is now jerking.

I’ve been reading this forum till I’m black & blue for the past month, and the support is nothing short of amazing. Any insight would be appreciated/support in just navigating a pontential diagnoses.

Thank you for whoever takes the time to read this through.

 

[affected]

I can't imagine how stressful the past 6 years have been for you.
However, not a single thing sounds even remotely like any ALS onset I've heard of. not even remotely. You have read here til you are black and blue, but you haven't found any PALS that have anything remotely like you. I can say that with confidence as I've been here a long time.
We can't contribute a thing - an ALS specialist who examined you has told you this isn't ALS and we are not going to argue that.

We have no doctors here, though some might give you medical opinions, only doctors examining you are able to assist in truth.

Please don't pursue this here, it won't help you. I truly wish you the best and hope you solve this soon as you are obviously in a state of extreme anxiety, especially with the lack of sleep.

 

[Nikki J]

Muscles not retaining oxygen is not at all the pathophysiology of ALS so it sounds like the cardiologist is not knowledgeable about ALS. This is unsurprising as it is not their specialty.

ALS is not a muscle disease. It is a disease of motor neurons and the reason we are weak/ paralyzed is that the signals the brain and spinal cord send are not transmitted through to the muscles because the motor neurons are dead. This is not an ischemic event at all. We oxygenate fine. Even respiratory failure in ALS is not a lack of oxygen to the lungs primarily it is a build up of carbon dioxide because the diaphragm and other muscles can not push the carbon dioxide out because the relevant motor neurons died

 

[Torrence Wade]

Thank you so much for y’all’s responses to me. It means so much to me.

I figured I’d keep y’all in the loop as things progress. I do have an EMG today (not by my own request) and will let y’all know the results after. Obviously scared just like the next person, but I’m hoping for the best.

I’m really trying my best to be level headed. I am slurring my words, having intercostal pain, balance is off, etc - but I won’t jump to conclusions until it’s official. Still just here for support as I go thru the motions.

 

[affected]

Let us know the results.

 

[Bestfriends14]

Doesn't sound at all like ALS and your EMG results should back this up. Please do let us know the results. Good luck.

 

[Torrence Wade]

Thanks everyone for being kind. Just one question - when I had my (above mentioned stress test) my PCO2 levels were high, is this worth mentioning to the neurologist?

 

[Nikki J]

You should tell the neuro everything and then they can decide what is relevant/ important

 

[Torrence Wade]

Hello all,

My EMG of both legs, and arm came normal. Praise! I'm super grateful for this.

I had that appointment scheduled far before I even thought about ALS (it was for sciatica - or the numbness in my leg so he just so happened to do an EMG), I say that to say I have another appointment with an ALS specialist at the end of the month and she will conduct her own.

@Nikki J , I read one of your posts once that Bulbar doesn't always show on EMG of the limbs. The ONLY reason I bring that up is because I do have symptoms like slurring (which my wife has heard), constant mucus so lots of clearing of my throat (took medicine for post nasal drip and reflux, to no a avail), trouble swallowing, and shortness of breath, excessive yawning, TMJ-like jaw pain (which hopefully is TMJ). So, I wonder about Bulbar only because of those symptoms, not because i'm disregarding the normal EMG - because it has given me some level of peace. I'm truly not trying to look for something that's not there.

When I see my ALS specialist doctor on the 30th, i'll mention all of these symptoms to her as well, and see where we go from there.

Grateful for y'all taking the time with me. I'm really keeping everything as level headed as possible.

 

[affected]

bulbar will show up in the limbs, not sure what context you heard Nikki say that.
You truly are grabbing at any straw you think will support you being determined to have the worst terminal disease without symptoms or medical evidence.
Your best approach now is not to post again until the end of this month when you have your second clean EMG.
In this time between, you can focus on healthy lifestyle. You won't get this month of your life back no matter what is found to be going on, so please, live it.