6 ms·

I don't know how this is relevant to HN but it feels well timed, for me. My wife is alive. She doesn't a terminal diagnosis. But for the last five years, she's

I don't know how this is relevant to HN but it feels well timed, for me. My wife is alive. She doesn't a terminal diagnosis. But for the last five years, she's had no diagnosis. Visually, she's stunning and fit. According to every test they run on her, there appears to be nothing wrong. There's no explanation for the temporary blindness, the rapid onset arthritis, the partial spinal fusion, the diverticulitis, the random bleeding, the persistent fluid buildup and inflammation or the new magical DVT they found when looking for something else. It could be autoimmune, it could not be, I could be anything at this point. And there's no one who either wants to or is qualified to look. I lost it after the title and lost it more through the first section. I couldn't even tell my wife what I was reading, when she came into the room. This story is the tale of all my fears. But where's he's poor, I'm not and where he has community, however temporary and dwindling, I don't. I cannot imagine having to explain to our daughter that mommy is gone but I'm constantly thinking about the possibility of it. I've been worrying about this eventually for a couple years now and I don't know where people find the strength but somehow they do. I feel for the author. I dread his reality every day.

John23832 4y ago
Can I ask how old you and your wife are?
- Markoff 4y ago
  > 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
  - igetspam 4y ago
    Spot on
davidgatti 4y ago
[flagged]
swottler 4y ago
[flagged]
sniperjoe360 4y ago
You can still do something about it, perhaps see a rheumatologist? That collection of symptoms seem to be right in their wheelhouse
- igetspam 4y ago
  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.
  - sniperjoe360 4y ago
    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!
DoreenMichele 4y ago
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.
ethotool 4y ago
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).
- igetspam 4y ago
  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.)
cfeduke 4y ago
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.
- Test0129 4y ago
  > 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).
  - tandr 4y ago
    Would someone be kind, and explain what PPO, ENT, HMO means? Thank you in advance.
    - plasticchris 4y ago
      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.
berdon 4y ago
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.
- igetspam 4y ago
  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.
  - berdon 4y ago
    I wish you success! Keep trying!
- blakesterz 4y ago
  I'll second this!! If you haven't tried The Mayo Clinic yet, drop everything and get an appointment there.
  - toss1 4y ago
    I'll Third This!! 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. EDIT: Expect to spend several days there with lots of tests and appointments. We've found that a number of the small house AirBnbs are reasonable and good options, and also the CoOp is great.
spellcard199 4y ago
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 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 https://www.youtube.com/watch?v=sfKWNeAywak&t=195s) [3] [Seronegative Spondyloarthropathies - CRASH! Medical Review Series](https://youtu.be/hvQkROf5rsQ?t=377 https://youtu.be/hvQkROf5rsQ?t=377) [4] [Progression of Spinal Fusion in Ankylosing Spondylitis](https://clinicaltrials.gov/ct2/show/NCT00085995 https://clinicaltrials.gov/ct2/show/NCT00085995)

John23832 4y ago

Can I ask how old you and your wife are?

Markoff 4y ago
> 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
- igetspam 4y ago
  Spot on

davidgatti 4y ago

[flagged]

swottler 4y ago

[flagged]

sniperjoe360 4y ago

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

igetspam 4y ago
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.
- sniperjoe360 4y ago
  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!

DoreenMichele 4y ago

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.

ethotool 4y ago

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).

igetspam 4y ago
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.)

cfeduke 4y ago

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.

Test0129 4y ago
> 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).
- tandr 4y ago
  Would someone be kind, and explain what PPO, ENT, HMO means? Thank you in advance.
  - plasticchris 4y ago
    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.

berdon 4y ago

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.

igetspam 4y ago
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.
- berdon 4y ago
  I wish you success! Keep trying!
blakesterz 4y ago
I'll second this!! If you haven't tried The Mayo Clinic yet, drop everything and get an appointment there.
- toss1 4y ago
  I'll Third This!! 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. EDIT: Expect to spend several days there with lots of tests and appointments. We've found that a number of the small house AirBnbs are reasonable and good options, and also the CoOp is great.

spellcard199 4y ago

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 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 https://www.youtube.com/watch?v=sfKWNeAywak&t=195s) [3] [Seronegative Spondyloarthropathies - CRASH! Medical Review Series](https://youtu.be/hvQkROf5rsQ?t=377 https://youtu.be/hvQkROf5rsQ?t=377) [4] [Progression of Spinal Fusion in Ankylosing Spondylitis](https://clinicaltrials.gov/ct2/show/NCT00085995 https://clinicaltrials.gov/ct2/show/NCT00085995)