▶ Common Variable Immunodeficiency Disease (CVID) – Mystery Diagnosis – YouTube
Hooray! I am finally off the pain killing regime that made it nearly impossible to type. I did type a few sentences very painfully but it was difficult to do, made constant errors. I am still feeling the drugs but it is going away and I make typos only every third word than every word. I did a fair amount of research on autoimmune diseases when I first became sick last month. Then I decided to watch some Mystery Diagnosis episodes.
This show is very useful for teaching doctors! Nearly all the missed or screwed up problems treating patients with strange symptoms was due to these being caused by autoimmune diseases! So after seeing a couple of these episodes, I saw the one at the top of this story. It was me in a nutshell. The early scenes where the lady couldn’t go up the stairs except by clinging to the bannister…was me. I was stunned. The sudden appearance of red rashes in the legs…again, this was me. The stomach problems, problems sleeping, the rising intense horrible pain that is a stabbing pain, not aches, was me, too. I wanted to hug the lady in the show, we are sisters indeed!
I argued with every single doctor I interacted with this month. I fought ferociously. One doctors sneered, ‘Autoimmune diseases are RARE’ as if this meant I couldn’t be the rare critter with the disease. I chewed him out telling him, ‘So, what is YOUR diagnosis?’ He had none! But showed zero interest in figuring out it was because he dismissed the only possible diagnosis. Another doctors claimed I was insane. ‘I love working. I hate being in bed. Why would I want to secretly lie in bed screaming? This gets me zero sympathy,’
He said I wanted him to be sympathetic. ‘Are you?’ I asked with great skepticism since he was not showing the slightest kindness to me. I glared at him from my bed daring him to say ‘Yes’ when he was obviously attacking my intellectual integrity and my ability to do research myself. One doctor suggested my research done this last month while my condition deteriorated, was making my symptoms appear. By then I had an answer and I felt like I was a lawyer shredding the opposition in court: ‘Ok, you tell me what is causing my autoimmune symptoms!’
Finally after five days, a woman doctor saw me, I gave her all the information and…she agreed with me and has arranged for me to go see a specialist that does only autoimmune patients. I will seem her (she is a woman) this week and can’t wait. I am sorry my blog has festered all this time but I couldn’t write and reading was hard since the drugs gave me double vision. Some doctors said I would become a drug addict if I asked for pain killers.
The pain was hideous! My entire body was burning with stabbing pain! I had to be on morphine! I hate pain killers and told them this but they withheld drugs too often because of fears I would become addicted to drugs I do not like to use ever. Only when I had doctors that listened to me and trusted me, did things go well. The bad doctors refused to believe me as if I didn’t want to fix all this which is infuriating. Normally, I use my regular doctor to do all this talking but he was on vacation from mid-June to mid-July! I am going to scold him when I see him next week (joking!).
Vasculitis Symptoms, Causes, Treatment – What are the symptoms of vasculitis? – MedicineNet lists the symptoms of my disease and I had every one of them and any damn doctor could go online and see the perfect fit. I lost 30 pounds in less than a month, for example, became so weak I couldn’t open pill bottles. I had severe muscle pain, too. At one point, I had to be on a heart machine because they thought I was having heart attacks and it certainly felt as if this was happening. And I had the sudden, unexplained rashes that appeared instantly in a virtual flash. Telling doctors to go to the website with this information was like pulling teeth, only one (a woman) did this. Sheesh!
cyclophosphamide is used to stop this horrible condition from killing the patient and no one gave it to me because they wanted to find the correct doctor to give it and I couldn’t get it for myself and the waiting list was three weeks long when my life was in danger. I got moved up by two weeks, thankfully, after explaining that I was being hammered by this and it was killing me rapidly.
Well, yesterday I had a huge sweating episode and…the attack on my body pretty much ended. I was stunned. It was like trench warfare during WWI. Suddenly, the guns went silent last night. I finally got to sleep easily. My digestion is still totally screwed up but I no longer vomit when I look at food and I can drink again without sending it across the room (don’t try this at home). My entire body was bright red all this month and now looks more or less normal.
My main food for a month has been jello. Tons of jello. It was a joke in our ward at the hospital when the nurse went around asking patients if they wanted to eat their jello and if they didn’t want it, they gave it all to me. I could also eat crackers sometimes. One day, I ate three graham crackers and thought this was a big step forwards. I am so happy to be returning to normal again…I hope. This has been a horrible, scary ordeal. Most of the time when I went to the hospitals it was after 2am. This is because it always become much worse at night.
The insurance I have is extensive and sometimes useless. Since there was no ordinary diagnosis slot for the insurance agents to click on, they said I get no health care! I told one doctor after being kicked to the curb by another hospital, that he was to give me the phone and I would explain that anyone who cannot eat or drink or sleep at all will die in three days so they had to take me in even if they had no idea what caused this…when the head of the hospital services came into the emergency room and said, ‘This is ridiculous. I have an idea.’ And she (note the sex here) then called the agent in charge of my case and told him I was going to come and go every day for one minute and thus not be a full time patient. This worked! It was hilarious, we joked each time I ‘left’ and came ‘back’ again (not moving an inch).
The US healthcare system should have been reformed years ago instead we got ‘Obamacare’ which was what GOP leaders wanted in the first place because it works poorly. I hate fighting hospitals all the time but one has to be lawyer to get sick these days. This is why all my family from top to bottom relies on me to watch over their affairs when they go into hospitals. And I have to be very severe about all this, I force hospitals to do my will including reporting them to regulatory agencies, meeting with the board of directors, bringing in lawyers, too. I file reports and call the cops, too. I have removed people from hospitals because they are poor health caregivers. I have forced hospitals to change protocols and systems and alter their way of dealing with patients.
But it is hellishly hard to do this while I am lying on a gurney screaming in pain, drugged to the gills. That was pure torture, not being able to impose my will on the hospitals. I hated it. A lot.
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Culture of Life News 
Welcome back. Sounds like you did a few circles inside Dante’s Inferno. Our health care system is rapidly devolving into a Third World status, mimicking what’s happening to the rest of this country. Nice job, “leaders”!
And this is why the U.S. is ranked as has the 39th best health care system in the world. I’m always shocked by all the people I run into that think we are number 1. It’s obvious these people have had no exposure to the system. It sucks, plane and simple.
Elaine, my mom had your condition back in 2002, my sympathies. My advice is to press your doctor to get off all the medications as quickly as possible. Best of luck to you.
I’m glad you’re recovering Elaine. I’m a doc in the UK system. When my father fell ill last year, our medical family (me a GP, 1 brother a neurosurgeon, another a Infectious disease prof, and a sister a ICU doctor) had a hellish time getting him the right treatment. Not throug lack of resources but poor highly fragmented care. We had to push for proper Ix, for adequate IV antibiotic treatment and review of a biopsy that was wrongly diagnosed as cancer.
I’ve no doubt that if we weren’t medical, he would have died or have unnecessary chemo. In our case, the problem was too many cooks. What he really needed was one good consultant in charge of his care with proper training of juniors through ward rounds. This traditional method of training has died – people get a certificate to prove ‘competency’ instead, which is a recipe for tick-box medicine.
Phew! What an ordeal!
Of all my GP Drs over the years, mostly men, the two women were standout in terms of empathy and rationality. With the men invariably ego was paramount over humanity. Sadly the two women quit the GP to specialize.
Now in BC having moved again, its impossible to get a family practise GP anymore, with walk-in clinics even declining patients. So much for Canada’s vaunted health care system, its badly broken.
Both my sister and daughter have autoimmune neurologic illness and have had the same accusatory medicine, where embarrassed or narcissistic Drs blame the patient. Mainly the its all in your head bs. It should be legal to sue those with such attitudes for slander since it ends up on the charts and follows you.
Our Honda sprang an oil leak once, I took it to the dealer and told them it was the inner crank seal , comes back still not fixed , back again,, i still remember the look of shock on the guys face when he found it was the crank seal. So I know if I told a doctor what I had that would never be it,, so what’s going on here? Why not just get on with the job ? Why have descriptions of disease google or otherwise if you are not going to use them.?
In the Mystery Diagnosis show nearly always there is this moment when the frantic sick person or the family of the sick person uses the computer base to find information and learn about autoimmune events!
WHY DON’T THE DOCTORS DO THIS? I told them, ‘If you are stumped, why not go online and watch that Mystery diagnosis show I pointed out to you? It exactly mirrors my own health problems and key features including the sudden hot rash on my right leg!’
Nope. No way in holy hell were any of them going to dare do this. I did persuade two medical students who were very interested in my case which had no diagnosis, to look at the video with me and they were quite amazed. I suspect they were punished afterwards for this heresy.
Real pleased to hear that you are recovering, Elaine. Thanks for letting us know.
Doctors don’t know much about health,it’s really funny how much faith some people put in them.
I was told I would have kidney stone attacks for the rest of my life by the urologist ,I was told to get used to them.
Urologist didn’t know supplementing with magnesium would cure me of kidney stones.NO attacks/passing of stones for 4 years now.
Magnesium also cured me of terrible leg cramps in the middle of the night.
But ask your typical doctor about magnesium and you will get a blank stare.
It is nice to read you have overcome your illness
Poison ivy oil has been referred to as a ‘superallergen’. Unlike an allergy to peanut butter or cat dander, which cause reactions in a few people. Almost everyone reacts to it. Somehow it makes the immune system go apeshit and attack literally everything.
FYI, Elaine. I had an autoimmune disease and beat it in about a month by staying totally away from anything made from a grain, dairy, and soy and limited my sugar intake. I also took Vitamin D3 and fish oil. Problem solved with no drugs whatsoever.
Chad
http://www.drweil.com/drw/u/ART03402/Vasculitis.html
http://www.earthclinic.com/cures/vasculitis.html
I’m glad you are recovering. Stay well!
Bravo!, Elaine, bravo!
Every time I read about something like this ordeal with the Medical Industrial Complex, I’m stunned because this confirms what Alan Watts warned about in the late ’60s and early ’70s that we will need a team a lawyers everywhere we go just to survive.
I’m so happy you seem to be out of danger initially and I hope your healing continues.
Someone else pointed out that the leading cause of death in the US is cars, guns and doctors –perhaps that might seem an oversimplification and yet I wonder.
Any thoughts on that, folks?
Peace.
They are issued a state license to practice, not to get it right.
Yahoo Dis information service, http://news.yahoo.com/american-lung-association-lauds-clean-power-plan-for-protecting-vulnerable-citizens-154339725.html#
comment there,
0
11
Obamas incompetence is insidious, and he couldn’t run a girl scout bake sale, let alone this country which he despises.
The great divider and chief is a lazy punk, who sits around in adult diapers, screaming like a chlmp, throwing siht at the walls and laughing like a demented hyena when some of it sticks.
The great climate lie is a despicable way for world governments to tax working class citizens more.
They ignore all facts to fit their flat earth agenda, like….
There hasn’t been any discernible warming for 20 years.
The oceans aren’t rising anywhere.
The so called climate scientists put in hypothetical data into computer models that spew out the results they want. No facts are used what so ever.
The last ice age had 4x the amount of CO2 in the atmosphere as there is now.
The ice in Antarctica is growing faster then it has in 100 years, and is causing Australia a lot of issues.
Polar bears are doing better then ever. Huge pop in their populations.
The Maldives has not lost one inch of beach in hundreds of years.
Every one of Al the bloated, polluter, Gore’s predictions have all fallen flat on his fat face.
The racist, elitist, climate hysteric, Leo DeCaprio has a larger carbon foot print then the state of Delaware, and lives like a king, but wants you to live like a pauper.
There isn’t one shred of evidence that CO2 is causing the planet to warm.
The founder of Green peace has called global warming a hoax.
Scientist who question the false science of climate change are demonized.
We should hope that the planet does warm, as in the past when it has, there was a boom in food, and human population.
The warmer the better.
Do not listen to any government when they talk about warming.
THEY LIE.
They wish to redistribute YOUR money to other countries run by criminal dictators.
Teach your kids to not trust anything a govt tells them.
Teach them to question Everything.
Should we care about our planet?
OF COURSE!
Just not on the prompting of the lying, slimy governments.
Especially from the scmbag racist Obama, who knows nothing with everything he touches turning to siht.
Missed reading you! So happy you are improving. What an ordeal with this pain…taken you to hell and back!!