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Karin & David Henderson

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If Doctors Had More Time to Listen Then You Wouldn't Be Looking For Your Own Meniere's Disease Diagnosis On The Internet

 

(How To Use Your Internet Knowledge And Still Keep Your Doctor!)

 

I spend a lot of my time helping people connect their symptoms to possible causes...helping them to recognize the normal and the abnormal body responses…helping them understand how the disease process creates newer and different signs and symptoms. I'll just refresh your memory about signs and symptoms. A SIGN is something that has to do with the senses. It would have to do with touch, sight, smell, hearing, and taste. Most commonly it has to do with sight: hence the term "sign". These are things we could all find if we knew where to look. These are objective, meaning they are straight facts. A broken bone is a sign. Bright red blood is a sign. A certain odor in a diabetic's breath is a sign. These are things an outsider would recognize. A SYMPTOM is an opinion, an interpretation. It is seen to be "subjective". It's your description of something you hear, feel, or see that no one else can. A trained medical professional can immediately start a critical thinking process.

 

For instance, you speak of a sore throat and a trained health care professional would look in your throat and probably see redness…a sign. You would describe the tightness and pain: symptoms. Anyone could see the redness... Only you could feel the pain and describe it. You mention a sore throat…and they would be looking in your throat: not your chest or lungs or heart. If you had a whitish coating on your tongue, they would not be looking at your liver for an initial assessment. Another sign would be fever (elevated temperature). They could FEEL your forehead or take your temperature with a thermometer. A sign: a fact. But only you could describe the heat you feel and the possible dizziness or lack of energy. Blood coming out of any part of the body other than a regular menstrual cycle is a sign of a problem. There are signs, not visible to the eye, that could only be confirmed by what are known as diagnostic tests. This now becomes apparent with things like X-rays. So a broken bone would be a sign on an xray, but look normal to the naked eye. Blood test, sputum cultures, CAT scans detect signs, but require more indirect investigation. They need a trained health care professional's attention and time to listen. Signs are objective. We can all become aware of them if someone points us in same direction. Symptoms are more subjective. Often your emotions are involved.
 

I teach people to be totally factual about their symptoms. You would create a list of facts. For instance you have a rash. You would want to state the frequency with which it occurs. You would describe how it feels as to itchiness, pain, and heat. You would mention if it presents changes in severity with any regularity. The signs would be its location, size (and any changes) and texture, colour, etc. The symptoms describe how you feel when you have this rash. In another example, a bone is broken and the pain is excruciating when you have to move the leg. Your doctor takes an xray and sees…(a sign) but he can't feel your pain (a symptom). You have to describe it. Symptoms present all sorts of problems such as gender, age and cultural expectations.

 

Recently a reader described her reproductive system problems in which her doctor had told her to get used to this…for nine years! Her description of the signs and symptoms led me to suggest another doctor ASAP. You don't fool a round with black discharge for nine years. Her symptoms might have been misleading, but the signs are definite enough! Her problem is showing (sign) the doctor exactly what she saw. This is very difficult unless you are creative. Some doctors will ask you for a specimen (sample). Your creativity could stretch to taking a coloured photo or sample bag. This might be a little inconvenient, but if it's important enough for you to seek help, do whatever it takes and the doctor should be very impressed with your determination.

 

So signs and symptoms, and other acquired skills, are what doctors base their diagnosis on. Their critical thinking skills will connect the different body systems for possible causes. But this process takes time and a willingness of the doctor to maybe think differently. And here is where a strange phenomenon is happening. People are bypassing doctors' offices and going directly to the Internet. The Internet is a mine of information! When you type in a couple of key phrases of signs and symptoms, your search will bring up a huge number of resources! Information from many different sources… some trustworthy and some not as trustworthy. And this presents you with a dilemma. Now you aren't sure what to believe and how it would apply to YOUR body…so you want to take all this to your doctor. DON'T DO THIS! They will most likely not see this the same way you do. You are doing this to help them with a diagnosis. And they may well view it as practicing medicine or interfering or not trusting them to know what's best for you. Just as you see yourself as an expert in your profession, they, too view themselves as knowing all about your body and what's best for you.

 

We all say we accept change, but secretly deep down inside we don't really want to add more options and make more adjustments. We know this would alter our comfort level. And our routines. So if you take your list of signs and symptoms to your doctor, along with your list of Internet findings, DON'T expect immediate congratulations on your wonderful research! Ego is present and so might be a challenge to their professional pride.

 

Let me give you an example of what I mean. A few days ago someone contacted us, and as usual, told us their signs and symptoms…mostly symptoms. She had already done the Internet searches and also spent a lot of time with her primary care physician and other specialists. She was still less than happy with the outcomes as everyone told her she had nothing wrong and that she would just have to live with her problems...and gave her a relaxant for her "anxiety attacks". I'll call her Nancy (not her real name). Nancy had been given all sorts of testing but nothing showed up. These negative results showed no pathology (disease causing activities). That's a good result, but it still didn't account for her symptoms…no signs.

 
No one could see her physical limitations and these were causing her a lot of problems. (When you are so dizzy and your world is spinning out of control, you really can't think clearly about fixing dinner for a farming crew!) So we talked for well over an hour. She told me all about her vertigo and ear pressure. We spoke about her lifestyle as a very busy farmwife. We spoke about her foods and how she had really changed everything till she felt she ate a very healthy diet. As her symptoms were situated in her head (physically: not psychologically), we discussed things that could get into her nose, mouth, lungs or throat. And even her eyes. It was at this point that she casually mentioned her sore throat and the choking incidents and the lump that always seems to be there. Could this have any connection to her dizziness? I don't know, but what if…. And why not? All parts of the body are connected. And the body strives for balance. In order to balance, the different systems, one borrows from another…till all are depleted until or unless the different elements are restored. Picture a swimming pool with a hot tub at one end. They have separate function, but are connected. It's easy to heat the small "space" of the hot tub but there will always be a little spillover of heat around the edges. And the same goes for the amount of the water levels. Both will equalize themselves. It's a law of nature.
 
Back to my conversation with Nancy. She also mentioned that sometimes her face and that side of her body became numb! Her doctor had sent her for an EEG (Electroencephalogram…a test to check the activity and structures of the brain for abnormalities.) No problems were apparent there. That's good and that's bad. She still has no idea how these symptoms come and go. And the severity of them is increasing. What was interesting as we tried to come up with possible causes, we discovered things she was doing herself to try eliminate her symptoms. Such as herbal and over the counter (OTC) remedies. Then we discovered some chemicals such as cleaning products that might be adding to the symptoms. Who knows... The point is that few doctors have the time to investigate like this. My point in describing Nancy's predicament is that this lack of investigative time is normal in a doctor's office. They are not given adequate time to do a thorough workup and discover relevant possibilities. (One of the most fascinating activities in big medical centers is "Grand Rounds'. If you participate as a patient, it means that you have something complex and all "brains" are needed to come up with a possible diagnosis. If you are a spectator, it's fascinating to hear all the cross-specialty thinking!) Just to add another comment to Nancy's information…I had sent her some information about possible "triggers" for her symptoms and she has just sent me an email back. She and her mother found several things that might be contributing to the throat and ear problem.
 

I had an email from a gal who stopped at the side of a road to watch a small plane do that she thought was doing acrobatics. To her horror and her health, she discovered the plane was crop dusting a very large area of farmland! And she was in the direct line of the plane's spraying path! Ten days later, she is in hospital in a coma. She is severely disabled. Can someone easily connect the incidences? It's tough.

 

So how can you use your Internet searches to "help" your doctor? After all it is your health and you have chosen to participate actively in your wellbeing.

 

I would suggest you read all you can about your particular problem. Get at least three and hopefully more, articles from recognized authorities. Read what suggestions they make if you like the information. DON'T do anything yet! Just read and think. Gather information and confidence in the subject. Digest this information. Do you agree with it? Disagree? Do you feel you can trust the writer? If you like a certain train of thought, ask questions of the writer. Don't accept anything just because someone wrote it. I am sure you know that on the Internet, anyone can link to a very credible site and hope that credibility rubs off.

 

Now that you have learned a lot about your condition, plan your next doctor's visit carefully. DO NOT take your research with you!!!! (MY husband proudly presented his doctor with several thick packets of Internet research… and was told not to come back…And if his doctor heard of any cure for his condition, he would be the first to hear it.! The irony is that he indeed found the solution to his problem via an email from the Internet!

 
Your research information is just like any other research for a school project.

Use the Medline link for conditions and drug side effects or possible complications. It's a government site and most doctors believe the information. Check out your prescription drugs or even the over the counter (OTC) products. I would check them out first. I used to send people to their druggists first, but lately they too are very busy and don't really want to answer all these questions. I find people are sent to the Internet to do their own research!!! You also want to check out anything you are putting into your mouth and thus body. A while ago I wrote an article about possible triggers for certain symptoms. These could be dental work and mold, or cleaning products, or many other things. We live in a world filled with chemicals, preservatives, and toxins. But we demand them as they make our lives easier. We are beginning to learn that there is a cost attached…our health. One of the challenges your doctor may have is believing that our environment is connected to your health.. And they may also not have the time to really study the concept. So now you come along and ask them to connect all the symptoms. It's the same as twenty years ago, when we had no idea that diet and heart disease or cholesterol could be connected, and it took the medical community a long time to accept this as truth. They tend to seek out double blind studies and these are very costly and take a long time. In the meantime you are not getting any better. And your research tells you that the answer is at your fingertips.

 

So be understanding of their cautiousness and their need to learn this their way. You can't force anyone to see what you see. And understand that they are very busy. Realize you are the most important person to yourself. But your doctor has hundreds and maybe even thousands just like you. Their appointments are usually in ten-minute increments. That doesn't give you much time to present your case…Alone try to have them see it from your point of research.

 

Having acquired all this knowledge now, you should be able to look at your symptoms and see a couple of possible solutions or at least a small hint at possible treatment. This will allow you to write out your symptoms with clarity. You can then ask if a certain treatment could be a possibility. You can refer to certain friends (Internet friends are friends) as having done this or that. But don't mention the Internet research unless your doctor has given you an indication that they accept this willingly. Be factual and non-emotional! If you have access to a medical article written by an expert or authority, by all means print it off, but don't, for instance, take an article such a the one out of the Seattle Times and use it as a reference.  But the REFERENCE used BY the Seattle Times could be a recognized authority, and that is fair. Lastly, think about how you would feel if your own professional status and capabilities were challenged. Then figure out how you would like someone to work with you to make this work. And do that. (It's a quick course Dale Carnegie.)

 

So until you know how it would be received, leave your Internet research out of the picture. Use it for your education. Many, many doctors are open to people doing their own research and considering their suggestions, but a few are still offended when you bring them another point of view. You need their help…to do your tests, to get specialist support, to be your advocate, to smooth your path through the health care process. They will be your best ally. And so is the office staff. Treat them all with courtesy and respect, and as you would want to be treated.

 

By Karin Henderson - Nurse, Retired.

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Additional Information

 

You can also read more about this in another article we have called Frustration About The Limited Discussion During A Doctor's Visit

 

If you would like to know more about the system we talk about throughout the site, please use this link to go to the Meniere's System Information page.


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