Posts by amberfalcon3

Nicole Taylor5 said:Honestly, it might be easier for me than for you. I've already made my peace with the impossible.

I was actually just scrolling through looking for my own MS thread when I stumbled upon this one. I guess if I could have one wish, it would be to wake up one morning after a decent night's sleep feeling strong, fit, and actually having the willpower to face the day.
That basically means being free from this constant, crushing fatigue. If you know anyone in Canada—or even just someone you can reach out to—who deals with MS, see if they can lend you a single small box of Enkorten peptide medication. I’m convinced I’d feel that surge of energy after just one injection. You can even use it as nasal drops; lately, I’ve been slowly dripping the contents from the syringe into my nose to avoid the needle prick, and honestly, the effect is exactly the same. But since I have MS, whenever I manage to get my hands on it, I use it every other day.

In their neck of the woods, this stuff is on the national formulary—kind of like how Medicare covers things here in the States—so it’s free for them. If you decide to ask your neuropsychiatrists or neurologists about it, though, don't hold your breath; since it isn't officially registered here in the US, they’ll probably give you a hard "no" immediately. Still, the drug restores strength and stamina (they even use it for asthma, though they haven't fully cleared all the hurdles for that yet).

Seriously, this could totally pull you out of your current slump. It shouldn't be an issue to keep taking your existing therapy alongside it if you really need to, and since a single box only has 6 doses, I highly doubt it'll break the bank. Just try to borrow one box and see.

Kevin Hall10 said:If anyone out there can offer some advice or a bit of guidance, I’m reaching out. I have a 4-year-old son who is struggling significantly with his breathing. Because he was born with extremely enlarged tonsils, the doctors haven't even bothered—at least based on his symptoms—to look for any other underlying cause; they just keep suggesting they be removed. The catch? He has actually never had a single case of tonsillitis, which is apparently the primary indicator for removal.
I can't shake this feeling that the issue isn't the tonsils at all, but something else entirely. He breathes through his mouth, struggles immensely to breathe through his nose, and carries himself with this specific head posture—kind of tilted back. Once he hits the bed at night, the coughing starts—it's intense, like he's trying to clear something out, but it sounds more like an adult than a toddler. Occasionally while he's sleeping, it seems like he stops breathing for a second, and then when he finally catches his breath, he starts gasping and coughing. Even right now, I can hear him snoring through two closed doors. During the day, it’s mostly just light coughing, but once I prompt him, he really starts hacking. We already went through the allergy testing gauntlet (the basics—dust mites, pollen), and he came back negative for those. I've noticed he coughs less when he's finally settled comfortably in bed; for a while, my husband and I actually wondered if he was just doing it for attention, but this has gone on far too long to be anything else.
Please, let me know what you think and where you'd recommend we start with diagnostic testing.
We saw a doctor for the allergy tests who also happens to be a pulmonologist (Dr. Pavlov), but once he took one look at the tonsils, he barely even glanced at the test results. There was absolutely no mention of spirometry or any of the other tests people talk about here on the forum. To make matters more complicated, asthma runs in my family, and my husband deals with neurodermatitis.
If anyone knows where or with whom we could get proper testing done in the New York City area, I would be incredibly grateful!

I honestly think your son needs much better diagnostic work than what he’s been getting so far. What you’re describing doesn't necessarily have to be asthma, but it could be something like chronic airway obstruction or even COPD. He needs much more thorough testing and a real diagnosis. It’s even possible there's an autoimmune component involved, especially since you noticed his mood seems to impact how he's feeling, which often points toward that.
My advice is pretty straightforward: Get a full pulmonary function test done via plethysmography—everything (FEV1, FEV2, airway resistance, lung capacity, etc.)—along with blood oxygen saturation levels, and check for various markers related to asthma, COPD, neurological issues, and so on. Only after all that is done can you reach a solid conclusion and diagnosis to determine the right treatment.
Don't ignore the recommendation regarding the tonsils, though. If they aren't functioning properly, they can seriously mess with other vital organs, so if specialists are recommending removal, it's probably best to follow through.
If that were my kid, I’d be jumping on these appointments and pushing for answers immediately.
Best regards,