JimL

Have you been to the Vanderbilt clinic?

I have stomach issues too that started with H Pylori. I even went on a second round of antibiotics a month later and nothing has changed. I have to wonder if it dings the immune response which cascades into other problems. There's so much we don't know.

If you don't mind me asking, what state do you live in? I pay for short and long term disability, so as long as I have a doctor sign off, I can get up to 6 months on short term. Long term is through my retirement fund, which is the state where I live. I've heard SSI is very hard to get. I just want to get back to where I was or close, to be functional. If I can't, it's going to suck. I feel for you as you seem to be young. Having something like this with the more life in front than behind would really suck.

Sorry if I've bashed doctors. I had very good ones in NY and good in Iowa, but since moving to AZ, not as good. I don't know if it's chance, geography or just a change in the medical field over the years, but I wish I had the doctors I had in NY or even Iowa. Just better at diagnosis in general.

William Osler said that if you listen to the patient they will give the diagnosis. This was 100 years ago.

My wife doesn't believe in doctors. She thinks the only doctor one should see is the medical examiner. One of her brothers had appendicitis and had to go to the hospital and her mom said she had to take a shower first. When I had spine surgery last October I was in the hospital for 5 days and she visited once.

My wife thinks it's in my head. She doesn't understand why I can't just push through it, like she would. The cardiologist wants me to see a EP Cardiologist that deals with elements of this. I could go to mayo, but I didn't have a good experience there. It took two months to get in and then the eye specialist was pissed because she said she didn't have my records and I contacted my PCP and eye doctor twice to send them over and allegedly they did and at the end of the visit it was like, yeah, you have double vision from 4th cranial nerve palsy that you've probably had for awhile but your brain stopped compensating. That was it. My regular eye doctor gets the report and says see me in a year. Thanks Mayo. If this turns out bad I am thinking maybe I should get a lawyer. How many Dateline and 20/20's do we watch about stuff like this where the patients were labeled and the doctors were wrong and yet it continues.

Remember CFS/Fibromyalgia? It was considered psychosomatic at one time. POTS was probably considered hysteria by some, anxiety by others. I have to wonder if doctors ever consider their confirmation bias and motivated reasoning and the consequences of such. The more I get into this, the more disappointed I am in the medical profession. I think part of it are biases and motivated reasoning and part of it is a business model centered on metrics and not patients. I have to wonder if there is a list we get on that labels us and it's like a permanent record that one can't escape. Just look at the woman in one the DI's videos that went to 41 doctors before getting good help. It's not like we live in a 3rd world backwater. I am having a hard time with this. What's worse, dealing with the symptoms or no one believing you. It's like I have some magical disorder that 99.9999% of people never heard of and therefore it's made up. Oh fast heart rate, it must be nerves. Dentists aren't a problem for me, at least not yet.

Some day.

They should turn the sound off on those things. It's enough to trigger someone.

Me too.

There's a lot of bad medicine out there. For every Dr House there are 100 Frank Burns.

I have short and long term disability insurance. Thing is, I am out of sick days, so I'd have to pay for my insurance when out which would eat up quite a bit of the insurance. I work for the state and what sucks is that our sick time accrues at half of what vacation time does. I don't use much vacation time and we're underpaid to begin with, but don't get me started. I have 5 years until I can retire. I'd hate to screw it up, but if I can't figure this out, I may have to bail.

Yeah, he's sending me to an EP Cardiologist that allegedly deals with POTS/Syncope. Worse comes to worse I could try Mayo, but it takes forever to get an appointment there.

Tilt table. I passed out at one point. About 5 minutes after I got the nitro, maybe 25 minutes in tops. When he said neurocardiogenic syncope, I said POTS, he said yes.

I'll also add some doctors don't like knowledgeable patients. I don't know if it's ego or what, but if you come off informed and asking questions like someone in the health field and you're not, you could be labeled a professional patient. I think that accounts for a lot of dismissal by doctors. Ever see the episode of Seinfeld where Elaine tries to get a doctor to check something out and there's a note in her record that she's uncooperative or something like that and every time she goes to a different doctor, they are so interested until they read her permanent record. I have to wonder if that happens for real.

Unless something sticks out on a CBC and metabolic profile, they don't get interested. There are a few reasons for this. One, medical practices are way over subscribed. Doctors often have hundreds if not thousands of patients they see in a year and you're just 10 minutes to them. The business comes first, get them in and out. Then there is the factor of competancy and gravitas. Just like anything else, a smaller percentage are really good and the rest ho hum or suck. Then there are the biases that come from experience and the generation of their training. POTS and autoimmune diseases were once the perview of psychiatrists. Remember when chronic fatigue and what would be lyme disease were considered psychosomatic? With all this considered, unless you have a doctor that had excellent training, did residency in a busy and diverse hospital and has natural curiosity and decent intelligence, you'll get the ho hum and worse. I would say in general, look for an Internist before a GP. Where did they do their residency? Helena Montana or Bellvue in NYC? Did they go to NYU medical school or something 3rd string? I would place curiosity/intelligence/desire to find answers high on the list though. I just think POTS is in the same place CFS was 25 years ago and unless you're dealing with a doctor that gets it because he's seen it or knows it really exists, it just going to put you in a 10 minute bucket and you're done. William Osler is considered the father of modern medicine. He said that if you listen to the patient, they'll give you the diagnosis. Lots of doctors either never got that lesson or forgot it.

Well, I went to the cardiologist today and he said I have POTS or as he called it neuro cardiogenic syncope or something like that. He sent me to a different specialist that allegedly works with that. I got the feeling POTS isn't his thing. He wanted to verify it, but then what? More specialists, no more sick or vacation time left and it gets tough to do the job with POTS. I just wish they'd get to the bottom of it already. And on top of this, my wife thinks it's all in my head.

Any updates on this?

Or running out of sick time at work.

I am. 2x a day.

At least it's not a MCAS diet. That would drive me nuts. Might as well be carnivore. I did Keto for 16 months. I DK if I can go back to it. Right now my stomach is messed up as are other things. Today was tough. I've been having symptoms I don't know what to do about. Belching/breathing/headaches/cold hands and feet/diplopia/bloating/left side abdomen pain/pain weakness in shoulders and neck and fatigued. I am ready to call it quits.

When they can't figure it out, it's psychosomatic.

I have or had high blood pressure and I am on lisinopril and metoprolol, small doses. I've lost 167lbs since June of 2017. I don't know if that has anything to do with it or getting the H Pylori or the back surgury. Anyway, here's a link to my thread: Not sure about lexapro and xanax. I know what the latter is, not the former. I had been using one knee high compression stocking due to a DVT I had in 1993, but the knee highs aren't enough. I got 20-30mm pressure thigh highs and I have full 30-40 stocking, but it's much harder to get on and the feet are tight. I need custom or something better like I do with the knee highs, it's just expensive. that said, the compression stockings help a bit. I try to use a bit more salt too. I just don't know what to do to make this right. Back in May, was hiking over 20 miles a week. Now I have problems just getting in a mile or more a day just walking. I can't imagine having to care for little children. That would be impossible. I have 5 kids, but the youngest is 13, so they are self sufficient for most things. Right now my wife is very stressed as more things are on her and she doesn't get this. She doesn't believe in doctors. She thinks the only doctor one should see is the medical examiner. I come from a different background. If you don't feel well, find out why. I hope you find anwers. There just doesn't seem to be a lot of doctors familiar with this and it seems that even the ones that are treat it symptomatically. I'd like to see more root cause analysis. If a few million people have this, it's common enough to want to figure it out.

I have a very similar experience, but I am new to this. I think some of my doctors think I am a head case. I have my followup with the cardiologist tomorrow. I have gastro issues as well. Belching, especially after eating. What started my crap show was a H Pylori infection last year that was confirmed through EGD with gastritis. I also have 4th cranial nerve palsy too, that became apparent through this. CT scans, MRIs, ultrasounds, all negative for anything that could explain my symptoms. I had a tilt table test last week. Passed out. That totally freaked me and I haven't felt well since. I hope to get some answers tomorrow. I think the key is to find a good doctor, meaning PCP. I am still looking.