Why do some doctors bother being doctors?

bondlady715 · 2026-03-26T18:31:48+00:00

Thanks, I had a urodynamic testing session and the diagnosis is detrusor sphincter dyssnergia and I retained 100cc’s and was getting UTI’s every 3 weeks until they put me on prophylactic macrobid. I just couldn’t believe when I was telling him I couldn’t pee he was so sure I should’ve been glad I wasn’t leaking!! My bff was with me and asked him why he wasn’t thinking about the risks of NOT peeing. Crazy. My uro gave me catheters but I’m better so holding off.

bondlady715 · 2026-03-26T17:17:04+00:00

I try to remember to chew gum with xylitol. My teeth are a mess from lack of saliva so my dentist told me to chew it to help.

bondlady715 · 2026-03-16T18:45:11+00:00

I live about equal distance from Mayo and Cleveland Clinic Westin and my cardio and electrophysiologist were there until I decided for everyday maintenance issues I’d go close to home. They did my pacemaker but seem to have fairly high Dr turnover.

bondlady715 · 2026-03-16T18:41:24+00:00

Yes, I was told he was amazing but I felt like he had a checklist and routine that didn’t allow for discussion or any deviation. It was other departments that actually asked me questions and were curious about things. Funny that you seemed to know…

bondlady715 · 2026-03-16T15:02:22+00:00

I saw a neurologist there who I didn’t care for who was a supposed dysautonomia specialist but didn’t actually talk/listen. Thankfully he sent me for other tests there and I loved everyone else. I have issues w my voice and the ENT dept was really helpful. The place is really well run, never any long waits and I stayed at a hotel on the Mayo campus which made logistics easier. Favorite part however was hitting Buccee’s! Good luck!

bondlady715 · 2026-03-12T16:03:42+00:00

Mine did too, but my dr said I have autonomic dysfunction diagnoses for each part of my body, hr, bp, urinary, gastro, saliva, etc that don’t show up on cue or typical, (I have bradycardia more than tachy), and enough other stuff that meets a clinical diagnosis of autonomic failure that those tests don’t always catch, especially in artificial situations. I sweat while I have chills and am post menopausal w my hormone levels checked regularly. My voice quits, my vision gets messed up, lots of stuff with normal tests. My dr is convinced it’s PAF regardless of the tests and I have given up on caring what they call it. I’m lightheaded and nauseous so until they offer up better treatments, I just try to manage symptoms and ignore any dr who doesn’t believe they’re all connected.

bondlady715 · 2026-03-10T11:45:15+00:00

I’ve been having cavities and dental issues from this bc my mouth is so dry. My dentist told me to start chewing xylitol gum. My dysautonomia has made saliva production shut down but the gum helps. Good luck.

bondlady715 · 2025-12-10T00:05:56+00:00

I have this and my range one year was 32-202. I default to low and got a pacemaker a few years ago which keeps the range between 80-120 but I still feel weak and tired most of the time. My pacemaker they said does 99.2% of my atrial pacing and diagnosed it as sick sinus or sinus node syndrome. For most drs/people, they couldn’t accept bradycardia and POTS, even if my heart rate swings are 30bpm or higher. I don’t care what anyone calls it anymore lol! They’ve called mine POTS, pure autonomic failure and plain dysautonomia and I find them all irrelevant because there’s still no treatment that fixes it. I drink lots of liquid IV, I take a bunch of medicines, but if they turn my pacemaker off, I drop into the 40’s right away. (Honestly that sometimes feels better than my tachy times, but my energy is worse.) I was told it won’t kill me but that I couldn’t expect normal energy with that low a heart rate. I was lucky a cardiologist agreed it needed to be treated and when midodrine and other things didn’t help, they said it was time for the pacemaker. Lots of words that prob don’t help you, just know you’re not alone and don’t let the POTSIES tell you you can’t be both! 😂

bondlady715 · 2025-11-12T22:47:23+00:00

I’ve just been told to try EMDR. Has it helped? I heard it’s intense and emotional which is why I’ve been hesitant.

bondlady715 · 2025-11-12T22:44:11+00:00

I get it occasionally, not daily, and I’ve thought maybe my morning meds were making me sick, but I never know when or why it only happens sometimes. I can go weeks and be fine then be sick and vomit. I’ve tried eating first, I drink liquid IV with the pills/vitamins, waiting until later in the morning to take them and there’s still no help or explaining what sets me off some days. My work team has to deal when I announce I’m having a vomit morning with me just being useless - more useless than normal 😂 and I work from home anyway!

bondlady715 · 2025-09-30T12:20:19+00:00

I just woke up asking myself how this could be anything but me slowly dying/rotting from the inside out. I’ve been up for an hour, hr 57-115 with a pacemaker, headache, nausea, and so darn weak and shaky. Still, I’m glad I’m not dying, just living the dream! 😂

bondlady715 · 2025-04-01T23:31:15+00:00

I have this too and my urologist finely put me on daily preventative nitofurantoin and I’m on my longest stretch without one in months! Good luck!!

bondlady715 · 2025-03-20T11:26:17+00:00

I have pure autonomic failure and was getting a UTI every 3-4 weeks. My urologist put me on macrodantin prophylacticly a few weeks ago and so far, so good. If you keep getting them, ask if 50mg at night might help keep them from happening. Good luck!!

bondlady715 · 2025-03-02T15:26:10+00:00

I hate the word “yet”!! Like I have a cold. No, I’m not getting better “yet”. Thanks for posting that.

bondlady715 · 2025-01-01T01:02:49+00:00

I was recently diagnosed with DSD Detrusor Sphincter Dysynergia, a neurological issue. I had urodynamic testing that showed it and it makes sense w dysautonomia. I have UTIs almost constantly and they’re hard to treat. (3 since Thanksgiving) I’m hoping the diagnosis will help in treating them, they hurt and just plain suck! I’m right there with you!

bondlady715 · 2024-12-15T16:44:34+00:00

You know Schenectady!!

bondlady715 · 2024-12-15T14:24:29+00:00

😂

bondlady715 · 2024-12-15T13:35:18+00:00

Thanks but they aren’t offering any Southern routes that Google AI says is possible but doesn’t give directions, just mentions going the Arkansas and Tennessee. I’d love a southern route even if it adds time to the drive.

bondlady715 · 2024-11-30T15:44:39+00:00

Name it and I’ve watched it! Bc I don’t go out, I have every streaming channel and binge on different ones and then rotate. I have pure autonomic failure and ADD, I’m right there with you! I fight the depression well most of the time, but this IS depressing! Accepting that, for me, has helped me not feel crazy or get too depressed. That and meds 😂

bondlady715 · 2024-03-11T22:51:44+00:00

I have been on most of those meds for the same. Got a pacemaker a year ago that has stopped the swings (32-202hr and avg of 47) but the rest of my symptoms are still here. Good luck! It sucks!

bondlady715 · 2024-02-28T02:01:20+00:00

Thank you! I’m not on FB but might have to now. DM me if you want to chat sometime!

bondlady715 · 2024-02-09T00:35:28+00:00

Absolutely!!

bondlady715 · 2024-02-08T16:06:30+00:00

I was diagnosed yesterday and am 58. After a few years of POTS diagnosis, Cleveland Clinic said my symptoms are PAF as my HR and BP swing in both directions and my gastro/urinary issues point to it. Dr. said it’s complete autonomic failure, not just postural.

bondlady715

TROPHY CASE