I am writing this post in the hope that it may help someone who is sick and not getting any diagnosis or help from his doctors. Someone who perhaps finds this post via Google. I hope I can help someone, since I can’t help my own family. Just remember: it’s YOUR body. It’s YOUR care. Do not hesitate to question doctors and demand alternative treatments if you are not getting better. Sickness is NOT normal, health is. Don’t be bullied by the medical system!
I read about a study the other day called the Invisible Gorilla experiment. Basically it is to demonstrate that we will miss unexpected events if we are concentrating on something else.
Go read the details about the Invisible Gorilla Experiment here. I’ll wait.
Ok, so people who were concentrating on one thing completely missed a huge thing that popped up. What does this have to do with anything? Well, for one, it illustrates that anyone can miss important events or facts if they are not looking for them. ANYONE. Now, let’s take this and apply it to medicine. Radiology, for instance. Another study was done at Harvard Medical School with radiologists, who are trained FINDERS. They are trained to find tumors, abnormalities, etc., and paid huge sums to do so. You would think that they would find a gorilla picture inserted into an xray of a lung, wouldn’t you? Not so much, actually.
Can YOU see the gorilla?? Then you did better than 83% of the radiologists. Keep in mind this was on a full sized xray, which is about 14″x20″. The gorilla was about 2″x2″ IRL! Go read the Harvard study. I’ll wait.
Hard to believe, right? Well, this is EXACTLY why so many people are misdiagnosed or not diagnosed at all in our current medical system. Doctors and radiologists and especially specialists are trained to look for certain things – their specialty. Once a doctor has an idea in his or her head that they know what is going on, they tend to stick with it. They have to see dozens of patients a day to break even in this insurance run system, they don’t have time to reevaluate a patient who remains sick.
Everyone really should watch Mystery Diagnosis on OWN (If you can find it! I could not, sadly.). It will illustrate what I am trying to convey about doctors who can’t be bothered and insurance + test driven medicine that does not look at the whole person. People are misdiagnosed and untreated EVERY DAY. Some get lucky and are saved like the ones on this show. Most die without ever having a proper diagnosis. Think about that.
Case in point: my mother. For over a year now, she’s had encroaching neuropathy taking over her body. She keeps going to the same doctors over and over again and not surprisingly, they keep doing the same blood tests over and over again and telling her she’s “fine”. I suppose she is, if “fine” includes loss of feeling on 50% of her body, loss of muscle tone, loss of appetite due to loss of taste and loss of motor control. She is wasting away (currently 100#) and yet the doctors keep telling her she’s “fine”. She has seen a neurologist who ran an MRI that came back “fine”. She has seen a couple of other specialists who also tell her she’s “fine”. They run a couple of tests which come back normal and they send her away. Meanwhile she is wasting away – literally. She is going to die. No two ways about it, she will die if nothing is done. (As of Jan 2021, the old bat is still living, but the loss of motor control is apparently permanent and was never treated with anything more than Lyrica.)
They’ve tested her for all the standard stuff, all negative. It’s not ALS or MS or any of that. BUT. BUT, what NOT ONE of them has addressed is autoimmune issues. I did a quick search with her symptoms and came up with several syndromes that could be the cause of her illness – just me and good ole Google. If I can find several possible diagnoses that have been ignored, why can’t the doctors? NOT ONE has even suggested she be put on steroids to see if that might help. I say, why the fuck has she NOT been put on them? What does she have to lose??
I’ll tell you: the doctors have their test results and that’s that. They are not interested in putting any effort towards CURING my mother, they just want to keep doing the same things over and over and telling her “it’s just the way it is”. They can’t SEE any other options because they are looking too hard at what they already know. They can’t see that gorilla. If all you’ve got is a hammer, then everything looks like a nail.
My mother has gone from a healthy, active 69 year old to a frail, immobile 71 year old that sleeps all the time. She has never been sickly in her life! We, overall, are a very robust and healthy family. She has never had colds and stuff like that. The one thing she did have back in the 80s/90s was ITP (Idiopathic Thrombocytopenic Purpura), which is an autoimmune disease. She got fairly decent treatment, although they did remove her spleen, which was not really an up to date procedure even then. When I look up “unilateral neuropathy” I immediately get a good sized list of ailments, many of which are related to autoimmune diseases, such as Chronic Inflammatory Polyneuropathy. Which happens to have the same symptoms my mother has. You’ll notice that corticosteroids are the first treatment in the list. I also found several other syndromes that have similar symptoms with various causes (including a few that list ITP as a precursor), but the one common thread is corticosteroids. (As of Jan 2021, she has not been treated with any type of steroid, as far as I know.)
If I can find this out, why can’t the doctors? Why aren’t they at least TRYING steroids? It’s maddening. They just don’t see any other paths than the one they’re on. Tunnel vision will be the death of my mother and many others who are unfortunate enough to have chronic illnesses and HMO controlled doctors. My parents are old and refuse to use the internet. They see doctors as all knowing gods who are always right and should not be questioned. Sadly, many people are like this. I can’t get my mother to question the doctors and/or demand a different strategy. She simply will not do it. I’ve told her all about the various illnesses I found and she still won’t question the doctors. Today I told her about the gorilla tests although I know she will not take it to heart. And my fucking brother will do nothing to advocate for her. I hope he realises that his inaction might well be the end of his mother – for whom he’s given up his whole life to please. That’ll be a whole new can of worms when she goes, lemme tell you.
Although I’m not close with my mother, it still pains me that she will waste away due to medical negligence. It irks me that my brother will allow this to happen. My family would rather die than do research and stand up for themselves. Literally DIE. (My father succumbed to COPD and dementia in 2017, both of which were not really treated.)
I just can’t believe I’m related to those people. I do what I can, but I’m not getting overly involved. I know better. They accuse me of not caring and abandoning them, but as soon as I make a move to DO something, then I’m just meddling and being unreasonable. So, I guess they are at the mercy of the invisible gorillas and bad medicine that passes for healthcare. It’s really very sad for them.
It’s sad for medicine in the US in general. Testing is what is passing for CARE. My niece who is also chronically ill just gets test after test after test. They do very little to actually treat her. I’m SO fucking grateful to be healthy. The healthcare system in this country is severely fucked up.