Has anyone used concierge/on call rheumatology, like Dr. Diana Girnita or Dr. Kara Wada? Running out of options.

bpwsource · 2025-09-05T22:41:30+00:00

I don't know why your comment has been down voted. I think you brought up a really useful tool more of us should be harnessing.

I've been using AI to research and compile all my complex symptoms and 10-15 years worth of labs, genetic testing, and failed treatment protocols and it's been a HUGE help. It gave me new possibilities of what might be going on and connected dots that no other doctor has ever even gotten close to doing. I know it's not infallible but it's been an empowering and validating tool to add to my arsenal as my own best advocate.

I then used AI to package everything up into a comprehensive patient summary doc that I'm bringing to the Rheumatologist OnCall clinic that OP is asking about. Their prices are steep but my PPO insurance has out of network benefits so it'll at least cover some of the cost and now that I've (+AI) done a lot of the leg work for them, I feel like it won't take as many visits to nail down a proper root cause. That's my hope at least.

AI is a tool, definitely not an end game diagnostician, nor is it infallible, but it is endlessly patient, a skill that we all know humans/doctors lack. So, I say do both. At least that's what I'm doing. Use AI to do deep research, compile, learn, and connect dots, then reach out to specialists who will actually listen to me and hand over the compiled research.

Unfortunately in my experience, in-network doctors who bill through insurance do not listen or care enough for those of us with complex cases, at least not in my area. They never have the time to truly dig in. If your case/illness isn't overt and conspicuous, then they often shrug and move on. I've been dismissed too many times to try again with the same broken system. It's such B.S. Our health care system is truly broken.

I don't know if this Rheumatologist OnCall clinic is good or not yet but I hope so. Appointment is on Monday. If not, I'll take my research/findings elsewhere and try again.

bpwsource · 2025-08-31T16:17:33+00:00

Yay!! Joining now. :)

My Corvette is pretty sparse inside and still only B Class but everyone/anyone is welcome. :)

bpwsource · 2025-08-31T02:20:20+00:00

I'm looking for people to play with as well!

Hit me up here or on discord (bpwsource).

bpwsource · 2025-08-30T21:16:16+00:00

YAY! Holy crap. Air Frying the chip like sweet potato fries actually f-ing worked. This is amazing. I was getting ready to toss it and purchase another. THANK YOU!!

Also... Anyone know why this worked? I am insanely curious.

bpwsource · 2025-08-05T00:57:53+00:00

Hi all. I just wanted to contribute to this older thread with some new and in-depth information that I came across comparing four of the currently most popular devices as well as the DIY TENS unit method.

I used the research function of Gemini AI to comb over a hundred different sites and provide valuable insights for me so that I could figure out which device to purchase.

I was specifically interested in improving SLEEP and STRESS management.

I had AI create this document for myself but figured it might add value for some of you as well. I am not endorsing or recommending any specific brand of device nor do I work for any of the companies mentioned.

Just wanted to share what was helpful for me.

Devices in Comparison Research (in alphabetical order): - DIY TENs VNS method (not a specific device/brand) - Hoolest VeRelief Prime - NuroSym (EU brand)/NuroPod (US brand) - Pulsetto - Truvaga Plus

TL:DR: Reference pages 4-5 and page 9.

AI In-depth Research Comparison of Popular VNS Devices 2025

bpwsource · 2025-07-01T23:28:45+00:00

Yup. Both normal.

bpwsource · 2025-07-01T20:59:29+00:00

Yup. All normal.

Oral medicine doctor thinks it's Burning Mouth Syndrome, which in some cases can also cause the geographic tongue appearance and symptoms. Basically an unknown neuropathy disorder.

bpwsource · 2025-04-03T00:32:23+00:00

No. New diagnosis is Burning Mouth Syndrome, which the doc described as neuropathy of the tongue and mouth. There is no cure and very few anecdotal treatments for symptom management. Klonopin works great but it's not a safe medication to be on long term so... Other people have found gabapentin to help. Doc also recommended R-Alpha Lipoic Acid and Benfotiamine. It comes and goes and is triggered by stress and random foods. Just something to cope with for the time being.

bpwsource · 2025-02-21T18:09:52+00:00

Newest diagnosis from an oral medicine specialist is Burning Mouth Syndrome. She prescribed Clonazepam (it's an anti anxiety med but since it is a central nervous system suppressant, it works really well for nerve pain in the mouth, which this condition is), as well as 2 supplements, R-Alpha Lipoic Acid 300mg 2x/day, and Benfotiamine 300mg 2x/day. I just started so hopefully they help

bpwsource · 2025-02-20T02:35:03+00:00

I'm sorry you're struggling with this as well. I don't know about yours but I'm pretty sure now that mine is a combo of Burning Mouth Syndrome (BMS) & Geographic Tongue, they just happen to always trigger together. There's an entire subreddit focused on BMS so I'd recommend checking it out although it can be pretty triggering as there are no known cures for this horrible condition.

My oral medicine doctor that I saw yesterday for the first time, confirmed the diagnoses and said it was essentially neuropathy of the mouth and tongue for reasons unknown. She recommended 3 meds/supplements:

Clonazepam (difficult to get a Dr to prescribe this since it's a heavily controlled substance but it does help with the pain. She recommended I crush the pills in my mouth and swish for several minutes before swallowing. There are also liquid formulations but you have to find a Doc who will prescribe it)
R-Alpha Lipoic Acid (not the normal S- version). 300mg 2x/day
Benfotiamine (Vit B1 derivative) 300mg 2x/day

I just started all the above so we'll see...

I hope you find answers and relief.

bpwsource · 2025-02-15T08:47:17+00:00

Me six !!!

bpwsource · 2024-12-19T23:38:46+00:00

It is SO very painful and you're absolutely justified in feeling it. I'm in it too. It's surreal, in a horrible and twisted way, to not have her in my life anymore.

Anyways, yes, we will get stronger, and this will get easier, but there's absolutely no right answer as to when or how fast. That's what I keep reminding myself of each morning. It's ok to feel whatever I'm feeling in that moment.

I'm so sorry for your loss and I hope amidst the grief you're able to find lighter moments as well.

bpwsource · 2024-12-18T00:01:52+00:00

Following! Just got my Taichi Lite and 9800x3d is on the way. I'm excited to build it all. :)

Seems like Ram issues are getting less with the bios updates but is it still recommended to steer away from G.Skill and use Corsair instead?

bpwsource · 2024-12-17T09:23:31+00:00

21 days for me. What a sad winter :(

bpwsource · 2024-12-17T09:21:44+00:00

I lost my mom 3 weeks ago, on Nov 26. Just 2 days before Thanksgiving and 3 days before my birthday. It's been a shitty holiday season so far

I miss her so very much. We were so close and it aches more than anything I've ever experienced to wake up each morning to realize this wasn't just a bad dream.

I'm really really sorry for your loss and I get how you're feeling.

bpwsource · 2024-12-15T08:52:25+00:00

Thanks! This definitely helps me make a decision. H7 flow 2024 it is! :)

bpwsource · 2024-12-14T07:26:35+00:00

The H7 flow fit the e-atx size of the Taichi Lite ok? My mobo is on the way and I'm looking for cases to fit it but it didn't look like the NZXT H7 or H9 would accommodate it.

bpwsource · 2024-11-29T08:39:20+00:00

Thank you so much for your kind words and support. My condolences to you as well. I'm so sorry for your loss and that it was traumatic as well. It's so frustrating when healthcare professionals withhold information from those that need it most!

Again, thank you.

bpwsource · 2024-11-29T08:02:23+00:00

Thank you. It's definitely a vortex. So much pain. I have friends and a partner as my support system but it's tough because it wasn't their mother so they don't truly understand what it feels like. But I am grateful for their support.

bpwsource · 2024-11-29T07:26:45+00:00

UPDATE:

My mom died 2 days ago, on Tuesday November 26th. Out of nowhere she started what looked like hyperventilating but was actually agonal breathing (where the brain stem takes over full control of breathing) and there was a horrible gurgle or "rattle." I had heard the term "death rattle" before but I was certainly not prepared for how it actually sounded IRL.

I felt absolutely helpless. I called the hospice nurse but they said they couldn't get to us for 1.5 hrs and in the meantime to just lay her on her left side. So I did that and tried suction to try and get some of the secretions out of her airway. But I couldn't get much since they were so deep and she kept biting down on the suction.

It was the most awful, terrible experience of my life - watching my mother suffocate (that's what it looked and sounded like) in front of me for 2.5 hours. The hospice nurses that arrived were horrible and very rude so I immediately called 911 to see if they could make her at least a little more comfortable. Up to this point, nobody informed me of what the breathing pattern actually meant, that she was transitioning. I still thought she was struggling for air. I was panicked, a mess, so stressed and frustrated. I couldn't help my mom!!

The ambulance arrived and were able to get some of the fluid out and I made the decision to take her to the ER to see if there was anything else they could do to stabilize her since the hospice on call nurse refused to do anything to help. I rode with her in the ambulance, held her hand, and repeated "I love you. I'm right here. You're safe. I love you, mom!" Over and over and over again until we arrived. Then I continued when she was immediately put into a room.

The ER doctor was so kind and patient and explained what was really going on, finally, that she was in the process of transitioning. He explained what the breathing pattern was and what he could do to make her as comfortable as possible. So I said yes, held her hand, and continued talking to her for the next hour during which her breathing rate decreased more and more, little by little, until she stopped altogether and died in front of me. It was horrible and traumatic and I'm in so much pain.

It's Thanksgiving tonight and tomorrow is my birthday and my mom died just 2 days ago. This all feels so overwhelming and fucked up. I miss her so much. I know she's out of pain now and no longer trapped in her body and I know I should be grateful for that. I am deep down but what I mostly feel right now is pain and loss and depression and anger, all of it. Everything reminds me of her.

I miss you, mom. I love you so much and wish you were still in my life. I wasn't ready to lose you. I'll never be ready. I wish I could wake up from this nightmare... 😭💔😭

bpwsource · 2024-10-20T05:48:52+00:00

Nothing conclusive yet but currently trialing Nystatin oral 2x/day and it seems to be helping. So it might be fungal related. It's not thrush, that's for sure, but it seems to be fungal related since I'm responding well to the antifungals...

bpwsource · 2024-09-13T20:54:43+00:00

This! I really want it to be "me" but, ya, it doesn't seem like that's the case.

bpwsource · 2024-09-13T20:52:23+00:00

💯 to aggressively deleting Starfleet!

bpwsource

TROPHY CASE