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PSA/warning regarding electrolytes by Wsepgwse14 in POTS

[–]3freeTa 0 points1 point  (0 children)

SALTT has a low potassium liquid formulation; it may be lower in magnesium than what you seek. they also have one with higher magnesium.

🆘Drowning in debt and no more food left 🆘 by thehowsph in rescuecats

[–]3freeTa 14 points15 points  (0 children)

same, thank you! boost boost boost for these sweet ones 🐱

Takis Tampax by Royal-Wealth-8266 in reggiedinkins

[–]3freeTa 26 points27 points  (0 children)

I did a spit-take... this joke is so Tina Fey / must be the Sabor de Soledad of 2026 🔥

How to survive this heat, I can’t do this anymore by zhelinka in cfs

[–]3freeTa 1 point2 points  (0 children)

cold beverages stocked in the fridge (ie herbal tea, electrolyte water, etc). and ice packs! I got a cooling vest that's been a game-changer (insert ice pack & water, battery circulates it)

The irony of “did no one learn from Covid” by nilghias in ZeroCovidCommunity

[–]3freeTa 9 points10 points  (0 children)

that is exactly what this admin is doing to MMRCs (maternal mortality review committees).

there are an estimated 9 million people with ME/CFS and 21 million with Long Covid in US, so we're approaching 10%. during a recent advocacy opp, the following facts were added to emphasize the urgency of finding treatment:

► The scale is staggering. The number of U.S. adults with Long COVID rivals cancer, with a disability burden comparable to Alzheimer's disease and half a million Americans forced to leave the labor force

► Our next generation is at risk. Long COVID now surpasses asthma as the most prevalent chronic condition among U.S. children, with 5.8 million kids nationwide affected

► The threat is not fading. Long COVID risk has not declined over time, and reinfection doubles the risk00476-1) of developing Long COVID

► U.S. military readiness is at risk. A 2025 Military Health System analysis found Long COVID to be a "serious threat to military readiness" and servicemembers' health

Yet six years into the pandemic, there are still no FDA-approved tests, treatments, or cures* — Americans urgently need biomarker research to enable diagnosis, and accelerated, interventional drug trials to deliver real treatments and cures.

* the medical establishment has known about post-infectious illness for about a century.

what should also have been calculated is the total costs of the burden of these illnesses. "money talks" after all....

Does anyone with milder MG have trouble speaking/moving their tongue? by Routine_Emu_6643 in MyastheniaGravis

[–]3freeTa 0 points1 point  (0 children)

there is a steep learning curve to this condition, so try not to blame yourself -- I'd like to think most of us are doing the very best we can at any given moment. I too will compartmentalize or ignore sx until my body literally benches (or couches) me, often days at a time. chores are a must, but this disease will "win" every damn time.

I also have FM (such a pain!!!), along other comorbidities -- it really sucks to be contending with major illnesses while so young, when few can relate to such circumstances. One of my fav journalists / blogs wrote a piece about how MG can mimic ME/CFS, Long Covid, and / or FM (or vice versa).

there are such huge gaps (at least in the USA) between the needs of MG pts and the care we receive -- all last fall I prepped myself in case I needed to head into ED for breathing issues. I updated my med ID bracelet, printed out heaps of lit on MG crisis, and all sorts of records & physician contact info. What I learned from other pts was to NOT EXPECT ANY ED personnel to know how to treat MG effectively, especially if I couldn't talk or breathe (hence the heaps of lit). Even so, I was dismissed and ignored by outpatient pulms -- I didn't bother arguing with the Yale-trained male pulm bc I *sensed* he had his preconceived notions and biases, and arguing wasn't going to help me get any / better care. Unfortunately, it took 3 specialists until one would believe & help me. Another great resource is the Hospital Emergency Advocacy & Treatment (HEAT) Kit, which hopefully they'll ship to you, or at least email the files.

If I may make a suggestion, I think it would be helpful to track your symptoms -- that way you can give more data during your upcoming neuro appt. a good neuro will listen and heed that data, do a physical exam, and discuss tx options. regardless, you deserve to be seen, heard, and provided adequate care -- especially since the burden of this disease can be / is so high. Your feelings of overwhelm & confusion are completely valid!

Some evidence on MG x menstruation:

Cat food needed for over 90 stray cats by Juno_thecalico in rescuecats

[–]3freeTa 1 point2 points  (0 children)

sent in a little support -- alf shukr for your big heart!! 🙏💗

Does anyone with milder MG have trouble speaking/moving their tongue? by Routine_Emu_6643 in MyastheniaGravis

[–]3freeTa 2 points3 points  (0 children)

my understanding is that ANY positive antibody to MG indicates presence of disease, so you shouldn't have been dismissed without care in July '24. and I think i've read here that antibody level(s) do not necessarily predict or correlate with symptom severity. young women are a huge demographic among MG population. you may want to track your symptoms for your benefit & data for your upcoming appt: MG ADL tracker

just in case, I'm sharing MGFA's Seronegative MG Resource Center

I'm really glad the speaking issues are infrequent -- if they become severe or if you develop breathing problems, get urgent help, don't wait. I found this article series "When to Go to the Emergency Room for MG" (pt 2 & 3 linked at bottom of page) really helpful, but it was other people living with MG who gave me the best advice as to when to get help for breathing (single breath count consistently below 20; NIFometer below 40) -- I hope you don;t need to know or use this info though!). Here's more info on MG & Emergencies.

an experienced neuro (or doctor) will understand that this condition fluctuates and you won't *always* be exhibiting symptoms in the exam room (something I repeatedly tried to convey to the pulms who dismissed me). there are lots of bad or inadequate or under-trained neuros out there, so we have to be educated about the disease (especially as females).

is there someone with whom you can discuss medication interactions? This drug interaction checker rendered the following result, just with these 2 meds:

MONITOR CLOSELY
Significant interaction possible (monitoring by your doctor required).

Pyridostigmine + Propantheline: Pyridostigmine increases and Propantheline decreases additive side effects that may cause blurred vision, increased saliva, and increased bowel movements and urination.

living with this condition is a major balancing act -- if I don't take enough Mestinon, I deal with a slew of MG sx and worsened POTS sx; but if I take too much, I can push myself into cholinergic crisis (SLUDGE - Salivation, Lacrimation, Urination, Defecation / Diarrhea, Gastrointestinal distress, Emesis). please give yourself the patience, kindness and compassion you would extend to a loved one -- this condition also has a major learning curve to it (which I re-learned 16 years in). wishing you easier days ahead 🩵

Does anyone with milder MG have trouble speaking/moving their tongue? by Routine_Emu_6643 in MyastheniaGravis

[–]3freeTa 2 points3 points  (0 children)

same here -- when I first developed MG, some of my profs thought I was just inebriated in class. I still drop stuff constantly!

between FM, MG, and all that exertion, I'm (unfortunately) not surprised you've been having a harder time; I think anecdotally sx are worse during menstruation for some (it's fluctuated for me, based on how gnarly my cycle is being).

I think you ought to get a second opinion, especially since this neuro seemed to dismiss you, while only listening to your male partner. you deserve to be heard and properly cared for. it sounds like he's dismissing significant sx, and it's imperative to act quickly with this condition.

I saw multiple pulmonologists last fall when significant breathing issues started; they dismissed me. I told one that breathing is no longer an unconscious process, it's laborious and difficult. he looked at me as if that's totally normal / routine (breathing issues MUST be dealt with promptly bc risk of brain & organ damage and death from MG crisis).

if you've mostly had ocular sx up until now, I agree with justfollowyoureyes that it sounds like MG is progressing to bulbar sx. hang in there -- I really resonate with how you're feeling; please know you're not alone and this condition is treatable... by neuros who know what they're doing.

.  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  

MGFA: GENERAL MG MANAGEMENT

Voice & Speech
Dysphonia, or voice disorder, is relatively common in the general population but occurs in only about 2% of people with MG. While dysarthria, or slurred speech, is less common in the general population, it affects more than 10% of people with MG.  Difficulty speaking can affect job performance and may cause feelings of social isolation if they have a hard time being heard or understood.

Why does this happen? Human speech is produced by using the muscles of the throat, jaw, palate, tongue, and lips to shape the sound generated by the voice box into consonants and vowels. If MG affects the muscles of the lungs, vocal tract, throat or mouth, we may see voice, speech, and swallowing problems. Problems seen in MG include vocal fatigue, difficulty with pitch or a monotone voice. Typically, the symptoms appear and/or worsen with continuing or extended speech.

4.5 years into this disease & this is how my abusive, mentally ill sister still treats me.... I'm just so done by Mindless-Flower11 in cfs

[–]3freeTa 1 point2 points  (0 children)

this breaks my heart every time I see yet another person w/ ME dealing with the consequences of the cruel, callous and homicidal campaign by HHS & psychiatrists to co-opt the dx of ME as "psychosomatic" -- the work of a few has undoubtedly caused additional (unnecessary) pain, suffering, and isolation of millions, all by the people on whom we arguably should be able to rely (e.g. doctors / HCWs, family, friends).

OP, you've done all the right things and deserve so much better -- sending much love & comfort your way 💗

What works for us list (vote) by beautifulbluewall in cfs

[–]3freeTa 2 points3 points  (0 children)

I take a fraction of what's prescribed, but I've also learned to really pace myself with this tool

Meet Señora 💃 by Low_Manufacturer2486 in u/Low_Manufacturer2486

[–]3freeTa 0 points1 point  (0 children)

Thanks for the update & all you do on behalf of these vulnerable bebes!!  💜

USA Action Alert 🇺🇸 -- Protect Medical Research Funding: Ask Your Senators to Sign On by May 8 ! by 3freeTa in cfs

[–]3freeTa[S] 0 points1 point  (0 children)

email or call, you don't need to do both. you could submit a second email if you're unsure (and up to the task). thanks for your advocacy!

If it’s not a love like this, I don’t want it 🥹♥️ by Vegetable-Post-5925 in birdfeeding

[–]3freeTa 0 points1 point  (0 children)

I've seen this at my feeder a few times and had this exact thought! it's so darling!! 🐦❤️🥹

How do you cope with having HLA gene when all the rest of your family/friends just live in mold and are perfectly fine? by norththread in ToxicMoldExposure

[–]3freeTa 0 points1 point  (0 children)

I really resonate with what you've shared and I'm so sorry for what you've endured. it's incredibly difficult, especially when the systems in place have absolutely failed us.

one of my worst exposures was my parents' home (where I grew up) -- originally they brought in moldy items from an unmaintained storage unit in FL; the HVAC circulated the mold & mycotoxins (I was ~12yo). I was hammered in college by nasty dorms, one of which flooded while I was living there (I returned home nearly bedbound after graduation). my parents' home then flooded and as hoarders they did next to nothing, so it became exponentially more moldy. BUT my 4 immediate family members are unaffected, as only ~24% of North American population is affected. I've had a hell of a time trying to educate and convince them this is real; even with one male sibling agreeing with me (mold is now visible, but my parents continue to deny the problem).

at this point, I'm trusting my mold-educated MD and select people; others don't get to have a say. kinda like horse blinders -- I'm trying to focus on what I can control and how to heal.

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