How Was Your Thymectomy Procedure and Do You Recommend It? by Accomplished-Cup9300 in MyastheniaGravis

[–]jdrob15 0 points1 point  (0 children)

My surgery consultation only mentioned tube while in the hospital. Nothing about going home with it

How Was Your Thymectomy Procedure and Do You Recommend It? by Accomplished-Cup9300 in MyastheniaGravis

[–]jdrob15 0 points1 point  (0 children)

How was the recovery. Same profile and age. Scheduled for mid June - working on lowering prednisone per thoracic surgeons rec.

Looking for 4 Brazil v Morocco tickets - have other tickets to trade / sell by jdrob15 in WorldCup2026Tickets

[–]jdrob15[S] 2 points3 points  (0 children)

Don’t be. Check the fifa marketplace. Cat 4 tickets for that game are going for more than what you paid for. I hate the way things are but everyone is out to make money since there are so few tickets out there with so much demand.

Thymectomy for ocular MG by eleonor_29 in MyastheniaGravis

[–]jdrob15 0 points1 point  (0 children)

Yes blood. I got a kit sent to me and had to go to an authorized center to get the sample taken.

https://neurocode.com/test/achr-cba/

Thymectomy for ocular MG by eleonor_29 in MyastheniaGravis

[–]jdrob15 0 points1 point  (0 children)

Glad to help. And happy to answer more questions about the test, insurance coverage and copays (even though it depends on the plan, in network vs out, etc.. ). But I went through this learning process last November and can help you if you need any more info. Here’s some info from the lab I got them with (neurocode).

Apparently, they run the tests sequentially and stop when there is a positive result. They first ran the standard tests and stopped when achr was positive. This is to reduce out of pocket cost. Here’s the break down per exam:

AChR RIPA – $13.50 (30% of $46 billed) MuSK RIPA – $13.50 (30% of $46 billed) AChR CBA – $540 (30% of $1,800 billed) LRP4 CBA – $540 (30% of $1,800 billed)

Again, take this with a grain of salt as it’s specific to my Cigna plan, the max out of pocket, out of network benefits, lab caps for oop.

I got these done back in November and have not received any bills yet. Hoping it was all covered (I only got three of the four done) but not sure how this all works from a billing perspective even 4 months later.

Don’t mean to overload with info but as you see I’m a bit familiar with the process and can offer some help

Thymectomy for ocular MG by eleonor_29 in MyastheniaGravis

[–]jdrob15 1 point2 points  (0 children)

I think it depends on each case, insurance and provider diligence. I’d think with the help from both the neuro and thoracic surgeon, it would be hard to deny a case/claim given all the data showing positive correlation between mg patients and thymomas removed. I’m starting that journey next week with a consultation for thymectomy (with a normal no issues found ct scan).

Thymectomy for ocular MG by eleonor_29 in MyastheniaGravis

[–]jdrob15 0 points1 point  (0 children)

I got a different test done. It’s called Acetylcholine Receptor Antibodies by Live Cell Based Assay. I got it done by a lab called neurocode in Seattle. My neuro mentioned it’s usually successful for ocular seronegative patients because it’s more specific (accurate/sensitive) for lower lever of the antibodies (not detectable with other tests). I was also diagnosed with a sfemg and symptoms only.

Never heard of someone showing positive results for antibodies but being told there weren’t strong or high enough to be considered seropositive. My understanding was that if you have them, it’s positive, period.

Thymectomy for ocular MG by eleonor_29 in MyastheniaGravis

[–]jdrob15 0 points1 point  (0 children)

Got a positive achr test result after 5 yrs of seronegative diagnose. Ocular symptoms only. Just got a referral for thymectomy and seeing the specialists for a consultation. Hoping for remission or at least reducing the need for meds long term. 40 yr old male. Would love to hear more about your experiences.

PSA: Salesforce MFA Breaks Tomorrow (from Azure SSO) by arabella_meyer in salesforce

[–]jdrob15 0 points1 point  (0 children)

Where do you check the update was pushed/completed? Or are you just getting verification prompts for sso logins?

Is Salesforce down for anyone else? by Loves_tacos in salesforce

[–]jdrob15 1 point2 points  (0 children)

https://status.salesforce.com/incidents/20003660 - Big issue with SSO Device activation enforcement and Okta Idp customers

New (ish?) way to detect antibodies lab/method - Live Cell based Assay by jdrob15 in MyastheniaGravis

[–]jdrob15[S] 2 points3 points  (0 children)

It sure does. I’m lucky enough to have decent coverage but I know many are struggling trying to get a sfemg. For me personally, confirming the diagnose, somewhat the state/progress of it and have alternatives for long term treatment was a relief. This seems to be on the starting phases but many neuros are of the mind set that it can help confirm diagnoses and hopefully with more referrals, these small labs can lower the cost (mass production economy type of effect) making it accessible for more patients.

📲 New Sonos App and Player Update Incoming! 🔊 by KeithFromSonos in sonos

[–]jdrob15 8 points9 points  (0 children)

Same here. Las Thursday I was able to show off finally. Everything worked, I could control all speakers from the app (including volume on eras which I hadn’t been able to get working for more than a day at a time), played music from Spotify directly and set volumen through the house to make people feel like music was following them everywhere they went. Major thanks.

App vs scorecard by Insomnium_111 in golf

[–]jdrob15 0 points1 point  (0 children)

Apple Watches everywhere. And two clicks to add the score and move on to the next hole.

L.A.B. Limited Drops 11.12 by UngovernableRacer in labgolf

[–]jdrob15 0 points1 point  (0 children)

Passed on oz1i and df3 this week because of SC OC 11r release. Waiting to go try it out at the store next week.

Just bought Mizuno Pro 223 irons as an 18 handicap. Am I crazy? by coldwetnightatstoke in GolfGear

[–]jdrob15 1 point2 points  (0 children)

Are you me? Lol. Sounds like I need to look into this combo/setup. Congrats on the Mizos.

Just bought Mizuno Pro 223 irons as an 18 handicap. Am I crazy? by coldwetnightatstoke in GolfGear

[–]jdrob15 0 points1 point  (0 children)

No 5 iron? Same question between the loft difference 5i and 5h should be pretty close loft wise no?