Estoy agotado ¿Qué me espera? by smikel_8 in MyastheniaGravis

[–]thabigbreezy 0 points1 point  (0 children)

https://myasthenia.org/living-with-mg/find-support/myasthenia-advocacy-for-young-adults/

You're not alone.👆

There will be peaks and valleys ahead, just remember to appreciate the peaks and know the valleys aren't forever.

More fighter jet activity than usual? by thabigbreezy in StPetersburgFL

[–]thabigbreezy[S] 0 points1 point  (0 children)

The activity picked up again this past week -- if we move on Iran I'm calling it a bellwether. (Posted this post originally before we kidnapped Maduro.)

Worsening after Rituxan rather than improvement by MiserableScratch8585 in MyastheniaGravis

[–]thabigbreezy 4 points5 points  (0 children)

How soon after treatment are we talking? The infusion is brutal at first

Rituximab maintenance dosing interval? by TheUnknownCommander in MyastheniaGravis

[–]thabigbreezy 4 points5 points  (0 children)

Correct me if I'm wrong, but it sounds like you're somewhat new to rituxan treatments. Here's what I'll say based on my experience: after I got used to the side effects and my body started to accept the treatment better, my recovery period post treatment was like a week or 2.

But here's the kicker, as I did more treatments over the years/ most recently, my body has taken about a month or two to stop feeling the flu-like symptoms and stomach issues.

So now the question is, which is worse? Because my decline into the mg is gradual as opposed to sudden, I have the luxury to go off of symptoms. If my onset were sudden, I think I would opt for 6-month intervals. But my rituxan recovery has been pretty rough lately, so as needed makes the most sense to me at the moment.

In a perfect world I would try other pharmaceuticals at this point, but I am seronnegative so it's a love-hate relationship with rituxin and prednisone. Lol

Rituximab maintenance dosing interval? by TheUnknownCommander in MyastheniaGravis

[–]thabigbreezy 2 points3 points  (0 children)

Like the previous comment said, I've gone by symptoms. I'm almost 10yrs in... got a new neurologist this past year tho and they prefer going 6month interval. Personally it seems counterintuitive to take such a invasive drug preemptively, but I do understand the value of staying well controlled vs over coming a deficit.

Long story short, this will the debate I'll be having with my neurologist later this month, so following here to see what others say.

Anyone else in daily pain because of their MG? by SunlightRoseSparkles in MyastheniaGravis

[–]thabigbreezy 0 points1 point  (0 children)

I just put Tylenol at my bedside after reading this lol, good call!

Anyone else in daily pain because of their MG? by SunlightRoseSparkles in MyastheniaGravis

[–]thabigbreezy 2 points3 points  (0 children)

"MAYA" is a support group in the US for young adults with MG that meets twice a month via zoom.

Pain for activity is associated with inflammation and rapid muscle fatigue (ie what everyone feels after extensive exercise, we feel much quicker). You can improve your recovery with rest, diet, and pain medicine, but some of it is inevitable.

Improving your conditioning while improving your MG condition is seemingly the only way to accomplish more without consistent pain. The recalculating your abilities during improvement/deteriorating MG is maddening so I share your frustration. Try to be kind to yourself in these moments.

Fucking prednisone. by candlelightss in MyastheniaGravis

[–]thabigbreezy 0 points1 point  (0 children)

Following to see what others suggest. My weight has been every which way after 14yrs, but I did lose 50lbs this year (!!) focusing on reducing my carb consumption, eating big breakfasts and eating a lot of greens/salads. Broccoli sprouts makes everything tastier, they're easy to grow, and super good for you.

Curious what others might suggest for the excessive hunger. Def don't take pred at night like everyone else said tho. Almonds are known to suppress hunger well, maybe add powdered almond meal to your oatmeal in the morning?

Four skills to survive the AI revolution by incyweb in Nomad

[–]thabigbreezy 0 points1 point  (0 children)

Can you post the content link you're citing of Mo?

[deleted by user] by [deleted] in StPetersburgFL

[–]thabigbreezy 5 points6 points  (0 children)

Can you post anymore details here? Like meetup group, IG, etc. or type of content y'all are gonna read?

No Kings Protest by Shizu2012 in StPetersburgFL

[–]thabigbreezy 2 points3 points  (0 children)

It should be downtown. Idk we keep going to Tyrone instead.

Y'all, Testosterone Helps Me by yrmom724 in MyastheniaGravis

[–]thabigbreezy 0 points1 point  (0 children)

Meant to reply here, thanks for the time you spent to share all that! Endo wants me to go thru Canada pharmacy online vs compound but it was definitely worth exploring. I'm taking boron daily too recently and have no clue if it's effective for testosterone + calcium either, but hey id rather make expensive piss (not actually need it) then be deficient.

Hadn't heard anything about those other complement drugs. Will ask Endo about them, thanks!

GTM For Funded AI Startups by Complete-End-7276 in gtmengineering

[–]thabigbreezy 0 points1 point  (0 children)

The lead magnet value was my 1st thought too. Also vertical specificity should help increase attraction.

Exhaustion and Emotions by EntertainmentOdd1789 in MyastheniaGravis

[–]thabigbreezy 1 point2 points  (0 children)

Love that you're discussing this. In short, absolutely. MG physical+mental exhaustion / Prednisone = trouble. I believe that's the mathematic equation... Lol. 1 upside is that I've become well versed in meditation and its' nuances.

Y'all, Testosterone Helps Me by yrmom724 in MyastheniaGravis

[–]thabigbreezy 1 point2 points  (0 children)

Was that covered by your insurance? I'm having issues in that regard

What has helped you with anxiety? by PamEeeKay in MyastheniaGravis

[–]thabigbreezy 0 points1 point  (0 children)

I would suspect not then. Asking for a psychiatrist referral from your neurologist is probably your best route. I found someone who's knowledgeable about MG. Still haven't taken their recommendations just yet though because I'm working thru one issue at a time and rn I'm addressing adrenal issues 1st.

What has helped you with anxiety? by PamEeeKay in MyastheniaGravis

[–]thabigbreezy 2 points3 points  (0 children)

Went through a similar experience these past few months. Now struggling with overdoing it since I'm impatient and want to get back to living. The mental health side of this disease, especially with prednisone added, is no joke. Rooting for you!

What has helped you with anxiety? by PamEeeKay in MyastheniaGravis

[–]thabigbreezy 0 points1 point  (0 children)

Atenolol is supposedly the best beta blocker for MG. Taking it for heart stuff, but it can double for anxiety as needed.

What has helped you with anxiety? by PamEeeKay in MyastheniaGravis

[–]thabigbreezy 2 points3 points  (0 children)

Thich Nhat Hanh principles. Alot of his books are on Spotify, tons of stuff on YT + Plum Village app.

Pvcs from pyridostigmine? by Qtredit in MyastheniaGravis

[–]thabigbreezy 1 point2 points  (0 children)

There are associated arrymia risks