Does anyone feel like only the doctor's opinion matters?

[jordanvp]

First post with a big rant
First off. My name is jordan, and for seizures I've had simple partial, complex partial, a few generalized, and a few drop attacks.
I've been having seizures since January of 2003 and I've recently noticed something. I feel like people only respect the doctor's opinion and choices.
Nobody has ever questioned when I started another medication (long list, trust me), raised the dose on one, or had brain surgery. Anything the doctor says goes.
I want to alter my diet to see if it will help but everyone around me seems to be in the mindset of "Why? Just because it MIGHT have helped SOMEONE doesn't mean it will help you. It would be too much trouble."
I have celiacs disease too, and in order for anyone to accept my diet change, I needed to go to a doctor for bloodwork for proof that the diet was needed.
Does anyone else feel this way?

 

[Nakamova]

I absolutely agree. Neurologists who actually listen and respect a patient's opinions seem to be few and far between. In many cases you have to be persistent and aggressive in order to get even basic answers. It helps to have a good friend or family member to advocate for you (see RobinN's posts for the amazing ways she has helped her daughter).

Part of the problem is systemic -- all kinds of doctors are constrained by liability concerns or by the insurance requirements. Few have the time or incentive to pay proper attention.

If you have celiac disease, you can take the steps to create a gluten-free diet without a doctor's permission. Gluten-free doesn't mean sacrificing taste or treats. (I've had gluten-free brownies from a mix -- very tasty!). There's some good info here on CWE about gluten-free cookbooks and sources. You can search for info using the search tab at the top.

 

[RobinN]

Hi Jordan -
I certainly understand where you are coming from. My daughter's seizures have proven to be helped after changing her nutrition. I do not use the word Diet as it has a negative connotation, and one that is changed at a whim. Nutrition is what each and every cell in your body needs in order to function at its optimum. Doctors can't disagree with that.

I was told that seizures were not based on "diet" ( I used that word at our first medical appointment, since I did not know any different.
I was told that hormones did not play a role either. Yet there is a significant connection, and many of our organs if not functioning at their best will affect these hormonal balances.

Nutrition plays a role in all of this. That was my line of defense when I felt "attacked".
Keeping a calendar with any info of events, has been very helpful when approaching these same "doctors" for support. As for family, I finally figured that they would have to look at their own nutrition, if they were to "buy in" to "diet" helping your medical condition. People are really stuck. I have heard the "It would be too much trouble... " line from a neurologist. It would mean they would have to give up their daily sodas... etc. It turns my stomach to see the snacks in doctors offices, and the physical condition of most of the staff. Appalling really when you think that these people are taking care of our HEALTH. They are suppose to be the experts.

Trust in yourself. Believe in the fact that you know what is best for YOU. It is not true that "Anything the doctor says goes". They work for you. If they don't then change and find someone that will. However, with that said, you must have adequate research to back up what you are "experimenting" with.

If you have celiacs, there is a tremendous amount of info on how it is a trigger for seizure disorders. You do not need proof as in testing. If you begin to feel better that is your proof. There are no 100% positive tests out there. The 100% test is for you to keep a journal and report what happens. However, it isn't a quick fix. Healing takes time.

Be strong.

 

[Meetz1064]

Jordan, I

have celiac disease. I understand where you're coming from.

My doctors listened when I got so sick that I dropped 20 pounds in 3 days and 80 pounds in a super short period of time because of it. They couldn't figure out what was going on, and were sending me from one to another for test after test.

When I finally drilled it into the EIGHTH doctor's head AGAIN what had started everything, he suddenly realized what it was, and that I knew what I was talking about, and that YES, I had celiac disease. TADA. (Can you tell how much faith I have in doctors? *ahem* *clearing throat*)

My celiac disease is under much better control now, though I occasionally get a bit in me here and there unintentionally. I feel much better, and my seizure control is much better as well. It is not perfect--I still need meds--but it's better.

Its worth spending the extra money to me to eat the more expensive food--the healthier food, produce, etc--than it is to spend the money on running into doctors for unnecessary tests, etc.

Gotta go. Take care!

 

[jordanvp]

@Robin: "Anything the doctor says goes" I used as an example of how everyone else seems to view the situation, because if the doctor says it, it MUST be right.

 

[Endless]

Hi, Jordon,

Welcome!

I join your rant. Yep, doctors can be pretty set in their opinions. I'm seeing one of the best epi's in the region, and his mind is not terribly open sometimes, either. For example, he said something I was experiencing was impossible. I brought in an excerpt from an epilepsy textbook which showed I COULD be experiencing it, and that it happens. He pointed at another book (a patient overview book) and said, "this one is for you," then pointed at the photocopies and said, "this one is for doctors." I just said, "And what if the answers I need are in THIS book?" (pointing at the textbook)

I think I'm kind of a pesky patient. I'm not going to quit bringing in research to reinforce my observations or my needs when he doesn't acknowledge them. He's a great doctor but I don't expect him to read every little snippet of information in every book or publication in existence. That would be impossible. I'm hoping over time, if I trot out supporting research every time, he'll begin taking me seriously the first time I mention something.

One thing we've all learned in here, at least eventually: we are all empowered to make our own decisions and drive our own healthcare. After all, we are the ones that have to live in our bodies and live with the consequences of the health care decisions that are made.

Nobody has to approve of your diet change. If you'd like help with your diet, see a dietician and they can help get you started. If you need a referral usually your primary care physician will give you one if your neurologist won't. If you want to do it without help of any kind, there are lots of books on the subject as well as information on the internet.

The test for Celiac's disease isn't pretty - the definitive test is a biopsy of the Small Intestine. That means sticking a tube down your throat into your stomach, then into the intestines. Ugh. You are sedated at the time, but still, ugh. You can try an elimination diet for a month or so and see if you feel better, too. That's cheap, non-invasive, and doesn't involve a doctor.