Can I ask how old you and your wife are?

> I cannot imagine having to explain to our daughter that mommy is gone

sounds like she is in her late 30s or early 40s and he should be similar

Spot on

Here synths are due to lectins from here diet, you can start here to solve here and yours eventual similar problems: https://drgundry.com - I hope it helps.

I would highly recommend reading the following books:

https://www.goodreads.com/book/show/450534.When_the_Body_Say...

https://www.goodreads.com/book/show/23346516-it-s-all-in-you...

Cases of long term unsolved chronic illness, especially with 'roving' unexplained symptoms, are highly likely to have a psychological basis, often either unresolved trauma or chronic stress.

You can still do something about it, perhaps see a rheumatologist? That collection of symptoms seem to be right in their wheelhouse

Last week's ER visit included a bunch of extra blood samples for a rheumatologist. It's hard to get one to see you without a recommendation. The doctor at the ER, this time, is the first to make that recommendation.

Yes keep going! It is hard to see one and have it covered under your insurance, but in America (if you are in the US) you can just pay out of pocket if your insurance doesn't cover it, or requires several hoops to jump through in order to get a referral.

You can also ask your primary care doctor to give you a referral. Most will oblige.

Out of pocket, the fee is probably a few hundred dollars for an hour consultation.

Best of luck!

I'm very sorry for what you are going through.

I hope you get answers. Sometimes people do finally get answers and sometimes it's life changing in a very positive way.

Very sorry to hear that. Have they performed a CT scan or MRI? Have they ruled out MS? Some of the symptoms you mentioned might be caused by MS (Multiple Sclerosis).

Had another CT scan last Friday, at the ER. They couldn't tell her the cause for the reason she visited (extreme pain, abdominal swelling, fluid buildup) but they did find that blood clot, so that's a new and terrifying change. She's had a lot of CT scans and MRIs and this is the first time she's had DVT. Now she's on blood thinners, so she doesn't die in the next month or so. Unless she cuts her finger chopping vegetables (almost happened while I was typing this) and she bleeds out.

(I have new additions to the first aid kit, for this new problem.)

Right there with you. We had a scare where my wife had to go to the hospital and stay at the emergency room for four days for stroke-like symptoms. She has many of the symptoms you've listed, and though her assigned emergency room doctor was unwilling to provide a diagnosis, it turns out that that thyroid medication has helped stabilize her condition.

What's baffling is the lack of any sort of help at the hospital and the inability to find a rheumatologist or specialist or just a regular doctor who gives a damn. They will maximize wealth extraction from their patients and provide no meaningful service. Every step of the way has felt like gross negligence when it comes my wife's medical care.

I have a couple of young kids. I stopped reading the article because I don't want to imagine my children growing up without their mother.

> What's baffling is the lack of any sort of help at the hospital and the inability to find a rheumatologist or specialist or just a regular doctor who gives a damn.

I guess this depends on your situation. I've been in and out of doctors my entire life. The doctors that give a damn are generally locked away from you if you're using some sort of state health plan or HMO. I have only ever had luck finding a good doctor by going through PPO. If you can do this, I would recommend it. PPO doctors make far, far more (because it's expensive even to you) but the specialist access is second to none. It took 3 months to get an appointment with an ENT once, and when I switched to PPO my GP had me into an ENT at my request the next week. Then you start the cycle of feeling them out and finding out which ones mesh with your goals.

It's tough, but navigating healthcare is tough. Just avoid HMO insurance and you'll do a lot better (or at least better than baseline).

Would someone be kind, and explain what PPO, ENT, HMO means? Thank you in advance.

PPO is insurance that you pay more for but you can pick the doctors and services. HMO is insurance where the insurance company picks the doctors and services. ENT is a specialist doctor.

https://m.youtube.com/watch?v=-wpHszfnJns&t=1627s

“A terrible guide to the terrible terminology of U.S. Health Insurance” by Brian David Gilbert

ENT - ear nose and throat

HMO - health maintenance organization. It's a type of insurance where you have to get referrals from someone you designate as your primary care provider.

PPO - preferred provider organization. Another type of insurance where some providers are "preferred providers" who partner with the insurance company to offer reduced rates. You don't need a referral to see a specialist, but many specialists won't see you without a referral anyway.

I have no idea what a "PPO doctor" is, I've never heard of a doctor that only accepts PPOs, that's ridiculous. I guess if a referral is required then the nebulous "they" won't refer you to the "good" ones if you have an HMO?? Except, in practice, you end up at the same handful of providers in your area no matter your insurance. I've had both HMOs and PPOs throughout the years, same shitty doctors on both.

It’s not the doctor, it’s the network. What OP was saying is that the doctors in the PPO networks seem to be much better than those in the HMO networks.

> you end up at the same handful of providers in your area no matter your insurance

This is very dependent on where you live and the density of providers. If you live in a small-to-medium size city or smaller, your description is accurate. In big cities, it's not; there is a whole set of doctors who don't work with HMOs at all, because they don't have to. They often are the best, most in demand doctors as well.

PPO is preferred provider organization. You can see specialists easier and have more latitude to pick your providers, assuming they are in the network. ENT is ear nose and throat, also called otolaryngologists, who do sinuses and hearing and throat cancers and that sort of thing. Usually they are surgeons. HMO is a health maintenance organization which is usually cheaper and offers less choice for the patients but also pays for preventative services more but can be bureaucratic if you have a rarer problem. I use Kaiser because I believe in the focus on data driven treatment and prevention, and haven’t had rare diseases yet. We have used them for vasectomy, breast cancer, cornea replacement, and trans transitioning all fine effect. I have a friend whose wife had some standard type of valve replacement and also had a good experience, tho my friend was heavily involved in meeting with the surgeons and consulting on the operation planning. Most people have common problems, so it works well as a first level, I think.

Edit: Kaiser is non profit. There are HMOs which exist primarily as cost control organizations, not primarily committed to health care, so experienced vary

PPO and HMO are symptoms of our terrible US health system. They are focused on cost control, not positive outcomes. Basically they are middle-men between doctors and their patients. They get to approve/deny care choices. They get to decide, ex post facto, whether or not they will pay for healthcare services, medicines, etc.

Here in the US, you can get surprise medical bills greater than $10k USD, due to these organizations saying "nope, not gonna pay for that."

While in some cases, homeotherapy, and similar, this is justified ... in many/most cases, it really isn't. HMO/PPO etc are all about reducing cost of the care, with these organizations funding themselves from driving down the cost of the the service.

Doctors have to hire people to handle dealing with the insurance companies (HMO/PPO/etc.) Its expensive and time consuming to deal with them.

Thanks for the info, I'll see if we can switch to PPO, especially with open enrollment coming up next month. It could be the difference between life and death.

My mom had a sudden acute glaucoma, we didn't knew it was glaucoma yet, and she was sent to hospital.

Same shit, wealth extraction, no proper care.

We begged help from her usual eye doctor, sent to him photos of her eyes that had obvious glaucoma for someone that know what glaucoma is, and he just replied she is fine.

Eventually we found on our own she had glaucoma and transferred her to a university, where students wanting to learn treated her, or tried, since they couldn't do anything without permission from licensed medics, and the medics and their teacher all were for "some reason" unexpecteadly absent.

She is getting better now, but got some permanent damage that wouldn't have happened if someone bothered to look at her.

In the initial hospital she went to, nurses told me they asked for a medical specialist to come and see her, that I could rest easy and they would fix the issue. Later on, my father asked one of the hospital administrators that is his friend, and he checked the records, and found out the nurses lied.

If that is the treatment you get when you are paying and when hospital administator is your friend, imagine when you are poor...

Somewhat related here in the US - when we had our second child, it was touted that with health insurance the cost out of pocket with my insurance of having a child was less than USD$1,000. The medical care providers figured out a neat way around this: they have a bunch of professionals come to the room after your child is born and have you sign paperwork for the post-birth checkup. (What I learned: do not sign anything.) Then, each professional is billed as a separate private contractor and our health insurance didn't cover service from a private contractor, so we paid around $8K out of pocket for service that used to be covered as part of child birth. (The benefit being that the hospital doesn't get bargained down by insurance providers if you get suckered into paying out of pocket.)

I feel like there’s an legislative fix for this: If the doctor is on the premises and you allow them to see patients, they are “in network”. If the doctor doesn’t like it, they can bill the hospital separately.

You might consider going to the Mayo Clinic in Rochester, MN. It’s world renowned for diagnosis. My wife had various, random symptoms and all local doctors were either baffled or suggesting absurd things in desperation. In two days a doctor at Mayo correctly diagnosed the issue and offered suggestions on treatment that worked. The local doctors were both disbelieving and angry.

Diagnosis was POTS (brought on by pregnancy) and the solution was exercise. Most doctors gravitated to a cardiological issue and prescribed various blood pressure medicine - none of which helped.

Aside from actual medical capability, the place is astoundingly futuristic. The entire process is streamlined. Everything is done within a few days, doctors and lab visits are coordinated and scheduled dynamically and in real time, discussions and investigations are immediately synced with an app, etc. It was…mind blowing to say the least.

I'll second this!! If you haven't tried The Mayo Clinic yet, drop everything and get an appointment there.

I'll Third This, from my wife's experience!!

Indeed, just drop everything and get seen by their specialists. Even compared with good Boston hospitals (kind of known as a Silicon Valley of medicine), Mayo is several steps above. Their paradigm is to really do an exhaustive search for the root cause, and work the best treatment plan. It may not be perfect, but it is by far the best available shot.

I wish you both well.

Yes! One thing that I found really neat was that there's a series of underground walkways between buildings on the campus, which is very nice because it gets cold in Rochester. The campus is also just very beautiful too. You're most likely going through something difficult if you find yourself there, and it feels special and nice rather than the experience of most hospitals where you can sometimes feel like a number contributing to their budget.

The tunnels extend a bit beyond the campus--there are places you can stay and not have to go outside to get there.

Unfortunately, they never figured out my issues.

I went there. Hand pain and every doctor elsewhere telling me it was some new random disease, recommending surgeries and botox injections (without doing any real testing).

At the Rochester Mayo Clinic, they did a whole spectrum of tests, multiple specialist doctors looked at the results and made a multi-angle evaluation. In the end, they said it was all in my head, and I could believe it because they went the distance to rule out other things and explained their reasoning transparently and deeply (a year later my hands were fine, and now 5 years later still fine). They even gave me a chance to ask all my questions and answered them patiently with zero pressure to get out and make way for the next patient.

It's an amazing place.

I posted to be able to vent a little bit and have it be pseudo-anonymous. The conversation had gone stale, so I figured I would type that out and walk away.

We've tried to get into Mayo but they've rejected her because she needs to get into the general diagnostics are and they don't have room. We're going to try again through the spine center because if we can get in there, they can refer across.

I wish you success! Keep trying!

Hello. I'm just a (bad) med student and I'm not qualified to make any diagnosis, but I think the clinical picture you have reported warrants further investigations and I wanted to share my thoughts while I was reading your post.

In the demographic of woman of child-bearing age the coexistence of more than one autoimmune diseases is not uncommon. Occasionally, there are even combinations of several of them [1]. As you've written, the manifestations you have reported may or may not be caused by one or more autoimmune diseases, but the ones that tipically keep autoimmune/rheumatologic origin in consideration even when labs are negative are the partial spinal fusion and the arthritis [3][2].

> According to every test they run on her, there appears to be nothing wrong

Does it? We have:

- clinical picture strongly suggesting some rheumatologic disesease: inflammation and rapid onset arthritis are typical, but DVT, random bleeding may also be linked.

- radiographic evidence of spinal fusion.

And that's exactly how (eg) Ankylosing Spondylitis has been diagnosed classically (i.e. when MRI was not an option) [4]. More generally speaking, as the name suggests, the diagnosis of most Seronegative Spondyloarthropathies is based more on clinical than laboratory criteria [3]. For how I understand it, ideally AS would be diagnosed before spinal fusion happens, but when it's present and there isn't a more likely explanation AS would be at the top of the differential diagnosis.

Another thing that came to my mind when reading DVT, bleeding, vision loss was that these are more typically seen together in of some kind of vasculitides, hence why I mentioned above an the possibiity of multiple autoimmune diseases, but these could also be explained by anything altering Virchow's triad.

> There's no explanation for the temporary blindness, the rapid onset arthritis, the partial spinal fusion, the diverticulitis, the random bleeding,

That sounds somewhat strange. While for temporary blindness, diverticulitis and DVT the cause may already be gone by the time the patient arrives at observation, at least for rapid onset arthritis, spinal fusion and random bleeding I think a diagnosis of the cause should be made.

The reason why rheumatologic diseases should be diagnosed is that if left untreated there will be periods of remission, when nothing happens, and periods of activity, when irreversible damage accumulates. Another reason to diagnose rheumatologic diseases is that they may themselves be manifestations of some other condition (e.g. rheumatologic paraneoplastic syndromes). We don't know if your wife actually has a disease, it may be not, but that's not a risk a doctor would leave to chance. It's just standard practice.

As I've already written I'm not a doctor, but if I may give you my advice anyway I would say your wife should go and see a rheumatologist.

> There's no one who either wants to or is qualified to look.

If I were in you, at this point I would go to some known research center with maybe a university department or ward.

[1] [Coexistence of Axial Spondyloarthritis, Systemic Lupus Erythematosus, Sjögren’s Syndrome and Secondary Antiphospholipid Syndrome: Case Report](https://dergipark.org.tr/en/download/article-file/1615538)

[2] [Approaching the Patient with "Joint Pain" - CRASH! Medical Review Series ](https://www.youtube.com/watch?v=sfKWNeAywak&t=195s)

[3] [Seronegative Spondyloarthropathies - CRASH! Medical Review Series](https://youtu.be/hvQkROf5rsQ?t=377)

[4] [Progression of Spinal Fusion in Ankylosing Spondylitis](https://clinicaltrials.gov/ct2/show/NCT00085995)

AS has actually been a discussion. She has a number of indicators that are "AS adjacent," per the last rheumatologist we saw (which I forgot about, until now). It's the best diagnosis we have but the treatments he tried had severe adverse reactions and didn't show signs of improvement. Combine that with many of the tests showing up as "close but not quite" aligned with AS, he suggested we explore other avenues because he wasn't convinced of AS.

> If I were in you, at this point I would go to some known research center with maybe a university department or ward.

That's one of the reasons we moved to New England. We wanted to be close to Boston.

This is great information. Thank you. I plan to review everything.