Unknown (Incurable) Disease Conundrum

unknown diseaseIt’s said, you can’t cure an unknown disease.   It a simple statement that took my mind in many directions.

First, I thought of how hard it to is get diagnosed these days. It’s always been hard for me; I’ve written about this for a decade. But now there are legions of people who suffer this problem and for more than one reason.

It could be they have a foggy birth chart like mine.  But Saturn in Pisces and also, Neptune in the sign, to some extent, is skewing reality for everyone.  Confusing hearts and minds and more, from what I can see.

Stacked on top of that, is the difficulty in getting health care.  It was the pandemic at one point. But it’s also the cost, both in time and money. It makes it difficult for many to get a diagnosis.  Difficult, if not impossible. Even when you do see a doctors, many have a zillion tests that reveal nothing definitive.

This is disturbing, especially if the statement is true: There is no cure for an unknown disease.

There may be something far more sinister here. What if the confusion is deliberate?

A number of years ago I was bitching how it seemed people forgot how to solve problems.  There may still be some truth to that, but now I see people have been given problems that aren’t solvable.   You’re sick and you can’t resolve it because what you have is unknown!

I was diagnosed with Lupus a dozen years ago. It was “rare” at the time. It’s no longer rare and I am not at all sure I have it. I am nearly off all medications I was given to treat it. I haven’t had a flare for at least six months; or really since I was hit by the cement truck @ 55 mph, nearly 18 months ago. But the diagnosis has been profitable for many, for years.

I’ve fared best, reducing the stress in my life, which includes reducing the number of times I see a doctor!

I did tell my doctor I wasn’t sure I had Lupus. He doesn’t know either. I  decided it would be easier to deal with symptoms, directly and independently, rather than frustrate myself trying to get a diagnosis that’s going to be wrong anyway.

My main point here is that it seems a good number of us have been given an incurable disease. Incurable because we don’t know what we have. Hmm.

Are you vaguely ill? Do you know someone who does? What do you think of the idea it’s may be by design?

31 thoughts on “Unknown (Incurable) Disease Conundrum”

  1. It think statement there is no cure for unknown disease is a trap of modern, at least western medicine. Its really not true. Sometimes, but not always. Yeah it’s nice if you can undersdand what is wrong so you can better find treatment but…the causes is often not being focused on by doctors, just treat symptoms.
    I think diseases are a lot more encompasing in terms of mind and body. Kind of like… Ok, obesity, you pop some pills and go on a diet, and keep doing this your whole life. Or maybe the root is psychological, which modern medicine misses.
    It’s such a complex question you’re asking. So many ways to go with an answer.

    1. You make good points. I wish I could have better made my point!

      It’s hard (for me) to say things when I can’t just spell them out like a normal person.

      I’m weary from trying.

      1. That’s understandable. I was not intending to criticize your writing at all. It’s such a huge topic you touched on, and I often think about it. I don’t have an answer, it’s such a multifaceted issue… Like on one hand I think we need to take more ownership for our health. Doctors are far from having even half of the answers so don’t expect doctors to “fix” you. They might!
        But I wouldn’t set my expectations that way. You’ll keep running with your hand out, they’ll keep saying well I don’t know try this…or some might say you have this, the only solution is this. I mean how true is it that 10 different docs will likely give you 10 different answers?
        On another hand, could argue that body remebers. Childhood, abuse. Ok we have therapy to try and deal with these things mentally. What about physically?
        I could keep going on and on, the topic you brought up stirrs up so many thoughts in me.

    2. It’s proven difficult to diagnose a lot of known diseases..In my case, I’ve had two potentially deadly conditions which weren’t properly diagnosed…except by me, at the last possible moment..both resulted in emergency operations of great severity, from which I fortunately recovered pretty well…Trust your senses and your body, and be ready to research medical issues thoroughly on line….

      1. It happens to even well known diseases! I lived with kidney stone diagnosis for years, having yearly routine ultrasounds each confirming presence and growth of stones. Was taking medication for it too! Eventually I was referred to urologist for treatment options…he did a ct scan because xray didn’t show any stones – and neither did ct scan! I was happy and relieved but it made me have a lot less trust in the medical system.

  2. Yes. This is a huge topic. I do have a sweet neighbor friend with ” long covid”. We have short talks on subject. My neighbor is aware of misfolding proteins and reletive neurological disorders that have a similar earmark (CJD, early dementia, and parkinsons). She also knows people are still getting long covid. The charged misleading info on Lymes goes back 13 years. The tests leave out specific indicators of the Lyme diagnosis and therefore insurance companies don’t have to pay for treatment. Terrible and I do think by design.

  3. Avatar

    (Please don’t be weary, you are right on track.) When you come to these realizations, and begin questioning what is wrong, that path will open up. Dis-ease(thoughts) is of the mind/body @ keeps you trapped. Freedom is with-in. Take time to scour the thoughts you’re having about these issues. I believe the answer also lies with-in including self healing. It’s Not easy but it is doable. Positive attitude keeps the ball in your court. XOXO Jeni

    1. Ha ha! Someone told me this “Dis-ease(thoughts)” when I was on a date, forty years ago. Specifically, he said, “If you’re not at ease, you’re DIS-eased!”

      I wrote the story of this guy! I’m not sure I could find it, but I remember the date like it was yesterday.

  4. Poisons and Chemicals – the Advent , Rise and from 1954-161 the Cancer Institute was given the Nobel Prize, not for curing cancer, but for studying it, and creating turbo cancers. Is it so hard to wrap your head around, we’ve been systematically poisoned since the first chemicals laced the whole world’s water supply in major cities since 1961. Within 10 yrs, all the new diseases, lupis being one, along with a legion of others they create names for to give us peace of mind IT’S KNOWN – THEY CREATED THE SICKNESS INDUSTRY, along with insurance “policy” – and not only is it supremely profitable, with residual Big Pharma Income, it keeps the masses busy, like work. We are in the End Times, which are Sick Sick Times. 5G pounds at the double helix in our DNA – the venom they’re putting in all things FEELS like relief from inflammation, which most are suffering from – but it’s paralyzing the cells – and it keeps the helix strand of DNA from coming together in the DNA that’s being assaulted. For some reason then need us on anti-histamines, as the human system is floundering with Allergy Symptoms from Living. The Old Patriarchal system is dying, and they’ve an ELITE Permanent One in the making – I know, what they don’t know. They will destroy with their unbalanced mind, the fragile balance the Earth maintains – which that saturation point will be met – and the Earth will explode, implode, crack and become liquid until it settles again. This is the 3rd or 4th time, humanity has reach this point. the Un-naturalness will not be supported in an Evolving Universe as this is. Little Man for all it’s smartness, is still the most stupid, and the most deadly on For Everything and the Planet itself. No one is arresting Evil. It’s become entertainment for the people who really care – and those who don’t care aren’t tracking what Conscious Organized Mafiosa Evil IS DOING – it’s got a plan, an agenda and it’s moving insidiously forward. NOT TO SCARE ANYONE – BUT THE TRUTH IS SO SCARY BECAUSE ITS BEEN HIDDEN AND TWISTED FOR SO LONG. And we could study the history of modern medicine and understand it’s been given to us only due to millions upon millions of innocent tortured souls.

  5. I don’t think it is by design that doctors are trying to give you the wrong diagnosis or simply can’t come up with a diagnosis. The human body is a complex mechanism in which every part impacts another part. And everything thing that doctors try to do to help is a double edged sword with side effects and complications along with benefit.

    What I do think happens is that people feel angry and abandonned by doctors who can’t fix them. Then they see the bills for treatment and become angrier still. Then they start wishing the whole thing would go away. What if this whole things is just a mistaken diagnosis. Then I wouldn’t have to deal with it.

    Recently a friend was found to have a migrated screw from a dental implant stuck up in sinus which is causing a blockage which in turn has resulted in an infection as the sinus cannot drain.Surgery was recommended to correct it. The preliminary tests were done.

    I called to ask how the surgery went. “I didn’t have it. It’s all a hoax. I am not falling for it. Doctors only want to make money off of you. No one could tell me how much they surgery would cost or how much my copay would be.”

    All valid concerns but “a hoax” after he was shown the MRI with the metal screw clearly visible?

    I have a condition that seems to wax and wane. I go in and out of it. (Lupus might be like this with flares and then long periods or remission.) When I am feeling fine I start to doubt that I need to go back to the specialist for the 6 month check up. It’s $430 a pop to see the specialist and who knows what additional tests she’ll recommend.

    I start to doubt that I am really sick as she thinks I am. I am going to enjoy my day and go for a run. Maybe this whole diagnosis is wrong. Or am I just trying to wish it away?

    1. In my case, the lack of clarity is bit clearer.

      First, I took medication for a condition for 22 years. Lots of side effects; one of them became permanent. Went off the drugs and there is no condition. In this case, I was dx’ed by a PA, who made an assumption. I am sure of this, as she interrupted me to say, I had something common – here take this. She literally said (I recall dialogue) “If I had a dime for every woman who….” I really liked her and vice versa. I didn’t question her at all.

      Regarding, Lupus, my blood was ANA+ when diagnosed. It’s been tested a number of times since – no ANA. By standard criteria, I do NOT have Lupus.

      I also no longer have symptoms of Reynaud’s. There was a time, I was sleeping with heated motorcycle gloves, set on high. I used to get puckered, turning blue fingers, just walking down the CENTER of the frozen food aisle in a grocery store. I didn’t even need to open the door to the case!

      Night and day from current. I haven’t experienced that for at least seven years.

      I also have had five MAJOR surgeries and healed without any issues, all five times. I think I’m primarily healthy, outside my spine, which is a true problem.

  6. its ‘both, and’. ive worked on pharma products that treat systemic inflamation. which is what most autoimmune diseases are. it is the fastest growing market in the world. no one know why this inflammation happens and it can manifest in hudreds of ways each unique for each person, and the drugs just cut off the inflammation signaling. there is no cure. the cure is a radical return to primal lifestyle, before these diseases became prevalent. most people cant do that, so they reach for the meds

  7. A friend of mine has perpetual heart problems that nobody can figure out or solve. At some point recently I started Googling for something like “how to investigate mystery disease” and came up with some links:

    The Undiagnosed Diseases Network:

    Mayo Clinic:

  8. I have a friend who had a serious back issue and some other issues that seemed unrelated but were also serious. She found Joe Dispenza books/youtubes and healed herself using his meditations. She found the books in the library and the YouTubes are free, so it cost her nothing. (You can go to workshops which are expensive, but they are not necessary.)

    I am wary and skeptical, but her story is rock solid. There are so many testimonials, it is quite stunning, especially for people who have been told there is no hope and no way to get better. Offering this up in case it speaks to someone. Obviously a lot of people have been able to heal this way, but you need to put in the work on the meditations, which is substantial.

    1. I believe it. My neck has improved. My doctor was the one who told me this via the x-ray. Different situation. It hurt so bad, two years ago, I had to lie on the floor, using traction, just to get a minute of relief. It was horrible. I was doing this many times a day, and pulling is hard. Mightily. I think I straightened it some.. significantly, but didn’t know this. It quit hurting as the weather warmed, but then my doc said it was better, per the film. I didn’t know it was possible to see improvement. It hasn’t bothered me at all since.

  9. Ha!! That is just so cool!

    Seems like we have had the medical profession on a pedestal for too long. What I like about the Dispenza stuff is it is people healing themselves. No dogma, no dependence on doctors or even medications. The joy in these people’s faces might be as much about being free of all that stuff as it is about getting healed.

  10. Not all of us are aware that health care is a business. When we give that a long thought, we are less likely to run from test to test in the hope of a diagnosis. My sister, in her 50’s, passed away last month from cancer. Yes she had a diagnosis and for 5 years she received chemo every 2 weeks with the exception of the weeks she had radiation. I am now in charge of her estate and received a bill from the famous Boston hospital for 2 treatments on dates after she had passed. I am most definitely certain she did not receive those 2 treatments. I am also fairly certain if I paid the bill they would have cashed the check. Again, I was reminded health care is a business, a big business at that.

    1. I am so sorry for your loss. I also lost my sister t cancer in Nov of 2023. She was diagnosed a year before. They told her 6 months without treatment and a year with. She went through months of chemo, then radiation, immunotherapy. By sept she had it in her brain, they gave her 16 radiation treatments. She became quite bitter due to the false hope and everything she went through to try to hang on. { I am sure that came from the cancers affect on her brain as well.} Thats why I have decided that if I get such a diagnosis I will go straight to Hospice.

      1. My goodness Opalina you have been through so much. I am sorry. After witnessing all the treatments I’d say I feel the same as you.

  11. I just went through blood work trying to find if I have rheumatoid arthritis. From the tests It doesn’t look like it . No explanation why some nights trying to sleep every joint in my body aches others I have no pain. My late husband was first diagnosed with PF , but when he wanted treatment for it from The VA , The specialists there didn’t want to prescribe it because his quality of life might be affected. I went to one of the top ILD specialists in the country at OSU. They did a lung biopsy {which almost killed him, that’s another story}. They said he had a rare disease, only 150 known cases ever world wide. No treatment. Said the good news was that it was slow so he could live ten more years. He was dead a year later. We do put too much faith in Drs.

    1. I am sorry for your loss, Opalina, and all you are going through. I am glad we are learning to trust our instincts although some people blindly do exactly what they are told no questions asked. This became very apparent with Covid. I hope you get some answers on the joint pain soon. Keep researching it. I’ll keep you in my heart and prayers. You have a beautiful name.

  12. Unknown disease or condition? Hmmm…. I worked for a medical school for a while and got to hear some of their lectures and over time. One lecturer said that medicine is both an art and a science… science because some things are known but also art because a lot is not known, and it’s up to the doc to use imagination/ experience/ trying things out to help someone.

    I’ve then had multiple nurses I’ve known tell me that a lot of times that the doc really didn’t know what they were doing or had diagnoses all wrong. I’ve had friends (usually female or troubled people) be told by shrinks they were bi-polar, which seemed to be a catch-all phrase for troubled people with hard-to-treat conditions. They were often on meds that didn’t help them at all. Now the catch-all diagnosis is CPTSD (although it’s a very real thing).

    Where does this all lead to? Well, to me, docs really don’t know as much as they think and there’s a lot that medical science can’t explain or predict. And, the way the medical field took shape is a lot more haphazard than they’d like to admit. I think the big con is really how they pitch their expertise, exaggerate some of what they claim they can do (often while knowing that), and hide when they don’t have the answer cos the human body is a lot more complex that we could imagine.

  13. Like I posted the other day I literally died last Tuesday and I’m back. The attending physician came to see me Thursday to talk about what happened and i told him I’m not mad and I’m definitely not litigious etc and I understand what happened to me (allergic reaction anaphylactic shock cardiac arrest after they gave me an antibiotic during surgery that they’ve given me before) was a freak occurrence that they were fortunately prepared to handle and I’m grateful they were able to bring me back and I don’t appear to have any major damage afterwards esp I don’t appear to have any loss of mental function bc they had trouble keeping me oxygenated for a bit. I told him I don’t remember anything that happened so I’m not traumatized by it but the whole dying thing I definitely have to wrap my mind around and gonna have to talk to someone about it soon I told him I understand it’s traumatic for them every time they have to do CPR especially when they lose a patient and I’m glad we’re able to talk about it openly bc I know people die and are resuscitated all the time at the hospital but when it happens to a specific person it’s a personal miracle. I held the drs hand while I talked to him and then we talked about bands and what shows we have lined up. He went to see Pearl Jam Thursday and he name dropped my favorite local festival and I told him as soon as they took out my breathing tube and I was able to use my iPad I saw they posted the volunteer information that morning but I was gonna wait a week to fill it out while I’m recovering bc my ribs are sore AF (but not broken)
    Anyway I forgot my point or that I had one other that to remind everyone I died the same day as Steve Albini but I came back

    1. You’ve had an incredible experience, but beyond that, you ability to see this from every angle is rare and impressive. It’s cool how you’re staying in it… to “pick that flower that grows at the rim of hell”. That’s a Michael Lutin quote.

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