Helioplex test

[Jmiller623]

Hey y’all!!! It’s been a while. Things over yonder are friggin crazy if you haven’t heard. 😂😫😂

Got 3 IVIG infusions and they helped tremendously with swallowing and cranial neuropathy. However, the effects are not sustained so I’m back to square one. Neuro-optho is pushing rheum for a plan and rheum is asking neuro to manage. Going to try to continue infusions if approved until I see rheum in February. Take the good with the bad. I know many who don’t even get this far. The other physician who tried didn’t have much luck.

On another note, had an interesting finding today....

Want to know if Helioplex sunscreen is really in your lotion?

Thermal scanner for non-contact temperature check wouldn’t give out a read today no matter how close I stood. Come to find out it uses infrared for readings which should be blocked by Helioplex but not typical sunscreen. So Neutrogena wasn’t lying.

Just a fun experiment during our not so fun appts. Find your face lotions that have Helioplex and try it out. Let me know what brands turn out to be liars. Be good to know since we definitely should be using Helioplex and nothing less.

Hope everyone out there is getting along okay. Christmas is just around the corner! 🎄🤶

[AnnNY]

That's a creative experiment!

[Jmiller623 in reply to AnnNY]

I mean I could be way off base but I didn’t think it to be a coincidence. Readers didn’t work on me twice that day but the ear one did which also uses infrared. A def one off observation.

[KayHimm in reply to Jmiller623]

Speaking of infrared, is there any reason we could react to those heaters that are in all the outdoor restaurant spaces during the pandemic. The has heaters don’t bother me, just the infrared ones.

Hope you find a medication that lasts longer than the IVIG. 🙁

[Jmiller623 in reply to KayHimm]

Oh man. I can’t stand close to those either but for me I think it’s any heat. But then with Raynauds and Livedo, I can’t be too cold. I’m like a Goldilocks nightmare.

Me too Kay. Me too. I don’t have many options at this point short of MTX which I do NOT want to take. I messaged my rheum telling her neuro will defer to her. Gettin the old run around. What’s new?

Hope you’re doing okay and have made a full recovery from COVID. ❤️xx

[KayHimm in reply to Jmiller623]

Thanks. Interesting you don’t like those heaters either.

Crossing fingers they come up with a new strategy for you.

Almost at baseline after months of the Covid aftermath. The steroid inhaler has made an enormous difference as well as a short course of steroids, which actually helped everything, even the dysautonomia. I couldn’t scramble eggs without sitting down to stir.

😘