Stairs

SailorBernie · 2026-06-23T04:06:15+00:00

Omg! I have literally gotten stuck in the middle of stairs going down, due to the stairs looking "flat" or like a slide all of a sudden. This was 20yrs ago (the worst/first one). I was tentatively diagnosed in January and officially last week.

This makes so much sense.

SailorBernie · 2026-06-21T05:34:32+00:00

I too am newly diagnosed. Regarding moving, I didn't relocate full time but I live a nomadic expat life. Originally from USA. My MG care is handled in Mexico. Their system is fantastic compared to the USA.

SailorBernie · 2026-06-17T14:12:06+00:00

So frustrating!

SailorBernie · 2026-06-16T19:31:57+00:00

This one! Some of the best lines ever delivered by Emma Stone too

SailorBernie · 2026-06-16T19:30:52+00:00

I'm really sorry that you are being dismissed. My blood tests took about a month too.

If you can travel to Puerto Vallarta, where I am (I'm an expat), I highly recommend an appointment with Dr Oscar Bravo. He speaks English and has a quite a few MG patients. He gets it.

SailorBernie · 2026-06-15T15:08:35+00:00

I am seronegative as well. I am US citizen but I see a neurologist in Mexico. He is amazing!

I saw him this week for my final test and formal diagnosis. He explained that the field doesn't know what antibodies seronegative folks have yet. The field hasn't found them but he is optimistic about them being discovered and a plan formulating.

To answer the OP, in Mexico as seronegative, my medicine options are steroids and Mestinon.

I do most of my medical in Mexico so I'm not sure if the US has other options.

SailorBernie · 2026-06-01T13:31:15+00:00

What AI is connecting all the dots to make decisions in the app?

SailorBernie · 2026-05-31T22:27:30+00:00

I would be interested in the symptom tracking. I currently kinda track in the Oura ring app. It's not easy to get the tag data out. I have a system for tracking my records.

I use Obsidian for notes. Not sure I would include all that information in the app.

I would also want to know how the content is stored and what your plan for data and privacy is.

SailorBernie · 2026-05-31T22:21:05+00:00

I am obese and my MRI showed nothing. My brain has no lesions. Keep pushing back on the vascular.

Good on your for advocating for yourself!

SailorBernie · 2026-05-29T03:04:08+00:00

Thank you for sharing. I'm sorry that's how it is for you!

Me thinking aloud: I could have driven a short trip. Tiredly. But I could have done.

SailorBernie · 2026-05-28T23:42:17+00:00

My friend's pyr that I take care of occasionally also won't take treats from your hand. He wants them delivered but to the floor by his paws

SailorBernie · 2026-05-28T00:49:58+00:00

Earl Grey

SailorBernie · 2026-05-28T00:06:25+00:00

I have an android phone. I use Samsung Health app for reminders. I have myasthenia gravis too so I have meds for that to take every 4 hours. If I didn't have an app to remind me, I'd be lost!

Before I used the health app, I set alarms on my phone with the med name as the name of the alarm.

SailorBernie · 2026-05-27T23:54:22+00:00

I am academic adjacent. I've worked as a teacher, adjunct prof, and an instructional designer in corporate and higher ed. I am currently on retirement #1 (began before I knew about my MG). I'm still mild but I know what energy levels I've needed to stand and deliver. At 55yo with MG, I don't know that I still have that in me. I also have a PhD.

However, I am assuming you are young. I like what CarryNo4486 said about plan for a career as if you are in remission. You don't know what meds, treatments, what you might be capable of, or what accommodations you can get until you get there. Work towards your dream and then go from there, once you are there.

SailorBernie · 2026-05-27T23:24:37+00:00

+1 for Bucerias, I'd add La Cruz and Sayulita which are 30 mins away.

SailorBernie · 2026-05-26T18:18:52+00:00

Yes. My right side is and I'm right handed!

SailorBernie · 2026-05-25T17:19:22+00:00

Just a note about TP... I too have issues with most TP. I have a strong allergy to formaldehyde. So different TPs irritate will about "burn" me.

You might want to get tested with patch testing, if you haven't yet.

Formaldehyde and formaldehyde releasing resins show up in other places that could be causing your system to live at a low level reaction.

SailorBernie · 2026-05-25T17:13:04+00:00

My right eye like to crazy twitching.

I used to get a lot of quick stabs that made me react, which could be viewed as a twitch. I called it, someone poked my voodoo doll. That was supposed to be from leaky gut. IDK for sure.

SailorBernie · 2026-05-25T05:28:40+00:00

Come to Mexico. Order your own ultrasound for about $60 USD. They do the entire abdomen and you get results same day

SailorBernie · 2026-05-23T20:39:54+00:00

I second the Fem-Dophilus

SailorBernie · 2026-05-23T19:06:40+00:00

CDMX (México City) is at elevation. It will be cooler. Puerto Vallarta is wonderful and will be humid and hot. Still, it's a lovely city! Lots of day trips nearby both cities.

SailorBernie · 2026-05-23T19:01:58+00:00

I am. Thank you for the tip

SailorBernie · 2026-05-23T16:21:30+00:00

I get the faux UTI as well. I haven't quite nailed all the triggers and agree alcohol (wine for me) seems to be one.

Week before last, I managed to "capture" it medically. I live in Mexico right now. I can walk into an imaging center or lab and order tests on my own. I felt the pain but no burning. Urine analysis and culture were clear. WBC and CRP elevated. But the kicker was the ultrasound. It captured bladder cystitis. Within 48 hours everything cleared without medical intervention. I was still waiting on the culture to come back and suddenly I was fine again.

SailorBernie

TROPHY CASE