Are you a cyberchondriac - asking Dr Google about health questions?

[JaneV2.0]

After my husband's stroke we were sent home with nothing. We were not offered any type of therapy and were told that most improvement would happen within the first 6 months and then level out. We weren't willing to accept that. I basically put myself through med school with the internet after that. We ended up with our own protocol for diet and exercise. I learned there was a type of physician I had never heard of (physiatrist) and we found one to take us on with alternative therapies. I didn't have a lot of trust with doctors since his dizziness had been misdiagnosed as vertigo and an ear problem instead of mini strokes leading to the big one. He had indigestion following his stroke which was poo poo'd and he was told to take tums. After that didn't resolve I started researching that, found heart problems often follow a stroke, pushed for a second opinion and he was in surgery within 24 hours after that second opinion (a hair short of a heart attack) getting a stent. You are the expert in your own body.

I've experienced that; my stroke-survivor relative is getting desultory care (and probably giving up their house to pay for it), and certainly no one is discussing nutrition or physiatrists. Year by year, I have less confidence that what passes for medical treatment in this country has much to offer, other than a splint or an MRI. I'll always be a supporter of Dr. Google.

[catherine]

I agree with Simplemind and Jane. My mother experienced a burst brain aneurysm followed by a stroke. Unfortunately I was only 25 at the time, and her "loving" 3rd husband disappeared after these events happened, because he quickly saw there was nothing for him in the relationship. And I was clueless and exhausted after just having had my first baby.

When my uncle and I had to make the very serious decision as to whether or not to liquidate her condominium (she had some severe cognitive issues subsequent to the stroke--basically she didn't know what planet she was on), I called her neurosurgeon to get an idea of the prognosis.

Her 5-word "consultation" was "They usually stay that way." No explanation, elaboration, compassion. So we got rid of her condominium and her stuff. Long story short, thanks to the astute observations of one of her best friends, after 18 months in a nursing home at age 50, we had my mother re-evaluated and on the basis of that, the doctor who evaluated her recommended that the nursing home stop many of her meds.

It was like the Robert DeNiro/Robin Williams movie Awakeninings. She literally "woke up" after a few days... started asking me about her belongings, my kids, my siblings. While she never was able to live on her own again, my mom was definitely returned to me. If we hadn't pushed for the re-evaluation, she would have spent 20 years in la-la land because after all, her doctor--a medical professional--told me that "they usually stay that way."

[Simplemind]

When we rushed my husband to the hospital he was misdiagnosed with a brain tumor instead of a stroke and didn't get any of the stroke meds that may have helped him. Several specialists told us that he would never walk again and he would have cognitive issues for life. As I said before we were sent home with nobody interested in follow up/care/therapy. We did everything on our own. We took his recovery on as a job. He not only walks but can run a short distance. We didn't think he would ever be able to ride a bike again (balance with feet off the ground) but he not only can ride his bike again, the BIGGIE is that he can ride his motorcycle again. This after barely being able to be a passenger in a car for more than 20 minutes and not being able to go more than 35MPH without significant vertigo. He can now drive himself down a freeway and we have taken several vacations and he can tolerate planes, trains and automobiles. His neurologists have been amazed. Maybe they shouldn't be so quick to write a 57 year OLD man off. They now think that the dizziness that went on for months was small strokes and his brain was rewiring during that time. All I know is that it could have been prevented and they dropped the ball. After it happened we could have been offered hope and assistance but they didn't. Thank God for the internet and a husband who never lost hope and inspired me to keep digging for answers.

[JaneV2.0]

When we rushed my husband to the hospital he was misdiagnosed with a brain tumor instead of a stroke and didn't get any of the stroke meds that may have helped him. Several specialists told us that he would never walk again and he would have cognitive issues for life. As I said before we were sent home with nobody interested in follow up/care/therapy. We did everything on our own. We took his recovery on as a job. He not only walks but can run a short distance. We didn't think he would ever be able to ride a bike again (balance with feet off the ground) but he not only can ride his bike again, the BIGGIE is that he can ride his motorcycle again. This after barely being able to be a passenger in a car for more than 20 minutes and not being able to go more than 35MPH without significant vertigo. He can now drive himself down a freeway and we have taken several vacations and he can tolerate planes, trains and automobiles. His neurologists have been amazed. Maybe they shouldn't be so quick to write a 57 year OLD man off. They now think that the dizziness that went on for months was small strokes and his brain was rewiring during that time. All I know is that it could have been prevented and they dropped the ball. After it happened we could have been offered hope and assistance but they didn't. Thank God for the internet and a husband who never lost hope and inspired me to keep digging for answers.

What an inspiring story, I'll relay it to my relative, who needs all the encouragement they can get. Their diagnosis was a hemorrhagic stroke, though not a single symptom suggested that--in fact, it seemed a classic obstructive case--so I imagine they didn't get the usual TPA treatment for an ischemic episode. If I should suffer a stroke (which is entirely possible, since both sides of the family have had them), I plan to take enough aspirin to dissolve anything in its path before the EMTs arrive. The medical indifference consistently shown in this country is disproportional to the amount of money one has to spend to endure it.

[JaneV2.0]

I agree with Simplemind and Jane. My mother experienced a burst brain aneurysm followed by a stroke. Unfortunately I was only 25 at the time, and her "loving" 3rd husband disappeared after these events happened, because he quickly saw there was nothing for him in the relationship. And I was clueless and exhausted after just having had my first baby.

When my uncle and I had to make the very serious decision as to whether or not to liquidate her condominium (she had some severe cognitive issues subsequent to the stroke--basically she didn't know what planet she was on), I called her neurosurgeon to get an idea of the prognosis.

Her 5-word "consultation" was "They usually stay that way." No explanation, elaboration, compassion. So we got rid of her condominium and her stuff. Long story short, thanks to the astute observations of one of her best friends, after 18 months in a nursing home at age 50, we had my mother re-evaluated and on the basis of that, the doctor who evaluated her recommended that the nursing home stop many of her meds.

It was like the Robert DeNiro/Robin Williams movie Awakeninings. She literally "woke up" after a few days... started asking me about her belongings, my kids, my siblings. While she never was able to live on her own again, my mom was definitely returned to me. If we hadn't pushed for the re-evaluation, she would have spent 20 years in la-la land because after all, her doctor--a medical professional--told me that "they usually stay that way."

I read a book once written about a man whose mother was slipping away, diagnosed with dementia. Through a lot of (pre-internet, I believe) research, and trial and error, he found that her (typical geriatric cocktail of ) drugs were the problem. Same story as yours, except she made a full recovery. Even something as simple as dehydration can cause symptoms in the elderly.

[Suzanne]

I also use Dr. Google, and I use my head. Google is what you make it.

[Gardnr]

There are 2 Dr Google camp stories. The article discusses 1 side. All your stories discuss the UP side......taken serious control of information and challenged the medical "experts" until they relented or you took it on yourself.

Sadly the other side are those with chronic condition complaints for which they take a drugstore full of meds and are never well again because nothing works. I have a friend who deals with a hypochondriac. He has every symptom he reads/hears about and goes to the doctor monthly. But he's never c/o of the symptom prior.

I'm a firm believer in having a primary care provider that practices Integrative Medicine. A broader view is a better view IMO.

[CathyA]

I have several "non-life-threatening" health issues that make my life difficult. Both DH and I have medical backgrounds. I look conditions up all the time. It's like having a medical library at your disposal. But you have to have a sense of the reliability and validity of what is being said on the internet. I am able to sort through the "facts" more than some people might, because of my background. It's easy to believe anything you read, but you just can't.

Anyhow.......in my most recent problem of having what I think is a hiatal hernia, which is causing me to have lots of irregular heartbeats, I came upon a new-to-me website, called "DoctorsLounge". I have to say, that the answers they give to all the various health questions are excellent. I don't know if it costs money to ask a question, but there is so much great information on there, even if you don't have a particular question.

It's just unfortunate that some of our own doctors can't help this much.

These kinds of sites are great......if you have a certain level of understanding already. Just don't believe everything you read, if you are a non-medical person. But otherwise, I think some of these more reputable sites can be a great resource.