How Important Is an 'Actual' Diagnosis

Epilepsy is not a stigma. If a doctor said that, it is a clear sign that you need a new doctor. I'd be concerned about his ethics, offended that he thinks I'd go along with it.

If the patient was concerned about the issue of driving or operating machinery, that is a legitimate danger not only to the patient but to others. Trying to hide epilepsy for that reason is not only a moral issue, but a legal one. The ramifications exist for a reason.

coming from a medical family I can tell you that it is a very real thing to not want to know if something is wrong with you. In fact, people die because they avoid wanting to know whats wrong with them. I think the truth is ultimately the best way to go.

I think it's important to know the truth. I know denial is easier, but ultimately the truth is the better route in almost all situations.

Diagnosis is not disclosure. Disclosure is telling people about what you have. Diagnosis is KNOWING what you have. YOU have to know what's going on with your body.

And honestly, a doctor that says that stigma is more imprortant than health - that kinda freaks me out. Well respected in his field or not, this is NOT professional.

If you have a seizure disorder, that is NOT the same as anxiety. I don't care if the medication is the same. The ramifications on your health are not the same. You can't manage EITHER the anxiety or the epilepsy if you don't know which ones you have.

My son has autism - and the stigma attached to that is HUGE. People don't really understand it. So I don't share the diagnosis that much, but I let the people who need to know about it know, and I educate them on what is affected, how it affects him, and how to help him. The only way to change stigma is to educate, not hide.

Get the diagnosis. Choose who you disclose to. Know your body and treat it accordingly.

Some questions that might be worth considering:

1. Suppose you get in an accident, or need surgery for something. Your history says "anxiety" when it's really epilepsy, and that knowledge might have helped the first responders or might affect how the surgeon approaches your care and treatment.

2. What if a family member has a similar problem? Say your cousin begins to experience seizures, and she says "well, my cousin had something like that but it's just anxiety so I'll just get some stress relief and massages and I'll be better" when in fact she has a serious disease with genetic links. If your cousin knew there was a history of epilepsy in the family, perhaps your cousin would seek treatment.

3. What if the symptoms change or increase? You won't know if you're experiencing anxiety or epilepsy, and you won't be able to discuss things truthfully with a doctor.

I do believe that sometimes the words aren't that important. For example, one of my daughter's diagnoses is called one thing by many doctors, and another thing by many others. However, the treatment is the same, and her doctors have explained that the two names are pretty much recognizable and interchangeable. A specialist will realize, no matter what you call it, what the symptoms are, what the treatment is. And all her doctors say "yes, it's often referred to as ___________, or some doctors refer to it as _________, but diagnostically, clinically, and in terms of treatment, they're the exact same condition."

However, anxiety and epilepsy are two different things. Perhaps they have treatments in common, but they aren't the same thing. No doctor would say "well, call it anxiety, call it epilepsy, same thing". And that's where the line should be drawn.

I would rather know the truth. If it's NOT epilepsy...? there could a lesion or something else causing the seizures...

just like with allergic reactions - better to know WHAT you are dealing with and not just a blanket " you have allergies"....

heh. a pretty detailed hypothetical, hon. i'm concerned.
i get the overview, but the anxiety of insufficient information would outweigh the 'benefits' on not knowing. if the medication could actually guarantee no more seizures, then i'd rather take it in the full light of knowledge than 'just in case.'
my prayers are with you no matter what.
khairete
S.

I'm a "call it what it is" person. My son has a few diagnoses and calling things what they actually are better helps me to work with his teacher/school/providers and to coordinate his care. Everyone is on the same page and no one is misunderstanding what is going on.

In the hypothetical example you provide, going ahead and being treated for anxiety instead of epilepsy will mean that if a grand mal seizure does occur, there would be nothing in the patient record which might be of any help in an emergency. I think stigma is a barrier to recovery and getting treatment, so I'm more of the 'I can handle things on my end and you handle your own feelings on this' sort of person, I suppose.

In your example, the treatment might the the same, but there are other times when it would be absolutely essential to know if it's a true neurological condition like epilepsy (for example, if further medical treatment were needed for something else). Anxiety is absolutely a real condition, but it might now have the same implications under other circumstances or for things like surgery or anesthesia or whatever.

I can't imagine not wanting to know what was going on with my body. I can see that someone with anxiety might feel even more anxious with a more "severe" diagnosis (although I don't like the idea that this dismisses the reality of anxiety).

I can think of instances in which a family member might decide not to tell the patient the whole truth, but there are a ton of variables there. By and large, I think, if it's your body, you need to know what's happening with it. What if symptoms change or something else happens? For example, if you're told you have anxiety instead of the real epilepsy, what happens if you actually develop anxiety (or worse anxiety)? Would you not change treatment or prescriptions because you have an erroneous or incomplete diagnosis? That sounds more dangerous than knowing the truth.

I am a fan of the truth. Also, I never met a doctor who could or would guanentee anything and certainly not with a 100% guarantee.

My doctor once diagnosed me with walking pneumonia although the only way to know for sure was having a chest X-ray. Since the treatment was the same whether it was actually walking pneumonia or bronchitis I opted not to have the X-ray because it did not matter.

Having epilepsy however seems like a much bigger deal and I would think a person would want to get all the information relating to their condition.

Umm yeah it matters what the diagnosis is.. I don't think its best to cut corners in diagnosing something just for the fact that a treatment might work for the same symptoms. Anxiety and Epilepsy are drastically different diagnosis, and will not always be treated with same medication. Dosage will fluctuate differently, etc.

Stigma is attached because of ignorance. You take people's influence and power off the table, stigma is gone. Taking power away from the disease is also beneficial to successfully living with it.

I would say it's very important. Mostly because while the treatment could be the same, the underlying cause could be different. It's funny, because my family has been through pretty much this exact situation.

My sister was diagnosed with anxiety, and was told that the medication for it would stop her seizures as well... She did that for about a year, then started having seizures again. She went to a few different doctors, and tracked down a true diagnosis. Once she went in and got that issue resolved, her seizures stopped and she was able to overcome her anxiety problem... Without having to be on medication for an indeterminate amount of time.

It's better to seek the source of any issues, rather than to just treat the symptoms. At least then, you will know if there *is* a cause that can be fixed, or if you will be managing a condition for the rest of your life.

Matters a lot. Because what if it isn't epilepsy or anxiety but is a treatable brain tumor. Which won't be treatable if you wait too long simply treating the seizures themselves.

I have been having health issues lately and my most recent symptom screamed Graves Disease, we all thought that was what it was for sure. We could have just started treating for it, but luckily we did the more conclusive testing because it turns out they were wrong, it is not Graves and we still don't know the underlaying cause. They would have been treating me for the wrong thing.

I feel like it's better to have a diagnosis of epilepsy for that example... Because there are real dangers to the community having an epileptic person driving on the road with others, or at a fair on an ammusement park ride, etc. that the patient needs to be aware of.

A diagnosis is essential. You need to treat the illness, disease, etc. not just throw wet paper wads at it to mask or hide the symptoms.

What if you were in a car accident and they didn't know you were allergic to a medication? They would not treat you the same way if they knew. Do you want to be mistreated??

I would want to know the truth and correct diagnosis so it can be dealt with and hopefully treated.

Find out the truth, just a smart way to go. Take care of it to the best of your ability and chose who you tell or don't tell. You don't have to tell anyone squat!

I would do as the doctor suggested. Have no further tests and take the medication. If, after being on the meds for awhile, you are still anxious Because you want to know if it's epilepsy you can have the tests done. I start with the most simple treatment first to see how that works. No need to start with the big guns if the little ones take care of the problem.

Knowledge is always power.

I would want the diagnosis in case of future advancements in treatments specific to that condition, as well as alternative treatments. There is usually more than one way to go for everything.

As someone who has an extended family member with something like you describe, I would say it matters. So what if the person doesn't take the meds as prescribed? Saying they have anxiety would give other people the wrong impression about potential risks. I might be ok letting a grandma with anxiety babysit toddlers. But probably not one with epilepsy.

Medical knowledge changes all the time. Medications change all the time. If you just go with "The heck with the diagnosis, this can be treated the same way as thing X," then you may never find out about new medical protocols, different medications, etc. that could help much more IF you were being treated for the correctly diagnosed disorder or disease. You (or the hypothetical patient) would not be in the loop, ever, for learning more about the condition, and would not be able, for instance, to participate in medical trials or take other meds that could only be prescribed with a diagnosis of, in your example, epilepsy.

I would run, not walk, away from a doctor who was either stupid enough or arrogant enough to promise "I can guarantee 100 percent" anything. Period.

Yes, doctors DO prescribe for "off-label" uses for certain meds. But to claim a 100 percent guarantee of no more seizures, ever? That is reckless. This doctor would be a quack in my book.

The mention of stigma and epilepsy is very troubling, as is the specificity of the example. Stigma is only perpetuated if people hide their conditions. That sounds like what is going on in this supposedly fictional example. If the patient here decides to avoid accurate diagnosis out of fear of stigma, then what happens if the patient ends up in the emergency room after a seizure (there goes that 100 percent guarantee) and there is no record of the condition? What happens if the insurance company gets involved and questions why the doctor was doing off-label prescribing in this case?

Someone said it below: Knowledge is power.

my dr is very easy going.. he listens to my kids chest .. if he hear rattles and crackes.. he says pneumonia.. he doesn't order an xray to confirm.. he says unnecessary radiation.. he will treat with antibiotics either way..

once I took a kid with fever cough.. all that.. he said probably influenza.. offered me a nasal swab for influenze.. but said kids hate it.. and it wouldn't change anything anyway. he said Tamiflu is not worth the money for a healthy kid.. so I stopped and did nto get the nasal swab..

so no.. it doesn't matter the diagnoses.. if the treatment is the same it doesn't matter.\

Updated

my dr is very easy going.. he listens to my kids chest .. if he hear rattles and crackes.. he says pneumonia.. he doesn't order an xray to confirm.. he says unnecessary radiation.. he will treat with antibiotics either way..

once I took a kid with fever cough.. all that.. he said probably influenza.. offered me a nasal swab for influenze.. but said kids hate it.. and it wouldn't change anything anyway. he said Tamiflu is not worth the money for a healthy kid.. so I stopped and did nto get the nasal swab..

so no.. it doesn't matter the diagnoses.. if the treatment is the same it doesn't matter.\

Umm, no one can guarantee you won't have another seizure and if they just recently started I would be concerned big time. My brother had one a few weeks ago and he still isn't allowed to drive, nor does he want to. He doesn't want to risk others in case he has another one while driving.

A second opinion is critical here...because treatment may or may not be the same. Plus the seizures could be a sign of something else. I would get the second opinion and a 100% diagnosis.

As a medical professional, I have a hard time understanding anyone who would consider it reasonable to treat symptoms instead of working to find and cure the underlying cause. Of course you want the correct diagnosis, no matter how "scary" it is, because that diagnosis will result in being properly treated. Medicine seeks to find a cure for disease whenever possible, not just to manage or mask symptoms.

If you are exhibiting symptoms of a potentially serious or scary disease, and a physician is recommending that you treat the symptoms instead of seeking to determine the root cause and treat THAT, I suggest that you take your PCP's advice and find a neurologist who will do their job.

Strength to you. I know that the unknown can be scary to face, but you can do it.