How my appointment went today....

[Pricilla]

So I just got back in, lots to contemplate ... ( my story is in the foyer in my intro)

Big news first: I am getting a MRI, but its a special one, i think 3d or something?After that I am doing the video EEG, which sounds terrible being video taped since I am an extremely private person. If you have any links to help me learn about these procedures I would be greatly appreciative.

The thing that stood out to me was the strange reactions from the nurse and dr regarding the keto diet.

First the nurse told me she was very impressed and went on and on- to which I replied, its not that hard. She was still in awe. I didn't get it.

When the dr asked he had the same reaction, and was quite interested with his head turned to the side. He looked at me like I was an alien!!!! I told him the only hard part was getting off the sugar. Again, strange looks... ( It really isn't that hard to plan ahead and make the right choices)

They both asked me where I found out about it, and I said the main epilepsy site, but then I branched out from there, and read all kinds of articles. I could tell he didn't believe me and he kept asking questions, I told him I found someone who had all their meal plans and had the nutritional content labeled and I mimicked that person. He told me that bacon was bad, and to eat more fish.... ok, ok,

He then said, "you are on a modified atkins diet. You have to be hospitalized and monitored by a nutritionalist to be in ketosis". I said, "but I'm in ketosis right now" He looked away and changed the subject.

Next he had no idea what is going on with me. He basically said that if my eeg was normal he wouldn't believe me and would have sent me home. O.O
But since i had an abnormal eeg with absence seizures we are going to dig in with the mri and video eeg.

This made me a little peeved, since I KNOW I'm not making this up, and I'm not crazy. I would never ever fake something to get attention. He just kept saying how it didn't make sense, but mostly he just wants to see the results and then give me a diagnosis.

Thanks for listening.

 

[walkerjm3]

doesn't sound like he believes you too much which is terrible. It's his job to listen to you and not for opinions.

 

[Pricilla]

I feel like since it wasn't the typical seizure and he didn't know the answer right off he just turned it on me.

 

[AlohaBird]

The thing that stood out to me was the strange reactions from the nurse and dr regarding the keto diet.

First the nurse told me she was very impressed and went on and on- to which I replied, its not that hard. She was still in awe. I didn't get it.

He then said, "you are on a modified atkins diet. You have to be hospitalized and monitored by a nutritionalist to be in ketosis". I said, "but I'm in ketosis right now" He looked away and changed the subject.

The level of ignorance among medical professionals regarding dietary therapies continues to astound me. I've been in ketosis for most of the past six years. And you're right, it's not that hard.
If you haven't already found her, you might like the website and book by Nora Gedgaudas called Primal Body, Primal Mind. She also did a talk at the Ancestral Health Symposium about Ketosis called The Holy Grail. Give that a google. She is a neurofeedback practitioner so she is approaching diet and neurological health together.

 

[walkerjm3]

It amazes me that when something happens that isn't straight out of a textbook definition, so many of them are quick to dismiss it.

 

[Pricilla]

Thanks Aloha I am checking them out right now.

 

[Cint]

The level of ignorance among medical professionals regarding dietary therapies continues to astound me. I've been in ketosis for most of the past six years. And you're right, it's not that hard.
If you haven't already found her, you might like the website and book by Nora Gedgaudas called Primal Body, Primal Mind. She also did a talk at the Ancestral Health Symposium about Ketosis called The Holy Grail. Give that a google. She is a neurofeedback practitioner so she is approaching diet and neurological health together.

Why is that so astounding? The medical pros went to medical school to study medicine, not nutrition, diet. If one wants help with their diet, see a dietician.

 

[Nakamova]

Was the doc a neurologist or was he an epileptologist? Sounds like your guy was the former, since he wasn't familiar with all the ins and outs of the ketogenic diet. And the fact that he might dismiss you altogether if you hadn't had a positive eeg is ridiculous! A trained epilepsy specialist knows that a positive eeg can help rule in an epilepsy diagnosis, but a negative eeg cannot rule it out. The diagnosis should be made on the basis of he actual symptoms you've been having.

As for the veeg, more info can be found at these links:
http://www.epilepsy.com/learn/diagnosis/eeg/video-eeg
http://www.coping-with-epilepsy.com/forums/tags/veeg.html
http://www.coping-with-epilepsy.com...ong-your-stay-video-electroencephalogram-2727

The MRI takes two-dimensional image "slices", but then computer software is used to join the images together to create a 3D model of your brain.

 

[Cint]

So I just got back in, lots to contemplate ... ( my story is in the foyer in my intro)

Big news first: I am getting a MRI, but its a special one, i think 3d or something?After that I am doing the video EEG, which sounds terrible being video taped since I am an extremely private person. If you have any links to help me learn about these procedures I would be greatly appreciative.

A video EEg isn't all that bad. Here is a link about the procedure:
http://www.epilepsy.com/learn/diagnosis/eeg/video-eeg

 

[AlohaBird]

Why is that so astounding? The medical pros went to medical school to study medicine, not nutrition, diet. If one wants help with their diet, see a dietician.

This is exactly the problem. Since when is good nutrition NOT supposed to be a part of "medicine"? Hippocrates himself said, "Let food be thy medicine".

Modern day "medicine " has gotten so compartmentalized. A cardiologist knows all about the heart, a podiatrist knows his feet, but who is treating the whole person? What could possible be more basic to good health than putting healthy fuel in our bodies?

 

[Cint]

Well, Aloha, unfortunately that is the way it is now. When I learned I had Type 1 Diabetes and went to the endocrinologist, he sent me to the dietician that works for him to learn all about the low carb diet and ketones, etc.

 

[AlohaBird]

This is why I'm seeing a traditional Hawaiian healer. External vagus nerve manipulation, nutritional counseling, breathing exercises. He's done more for me than Kaiser's whole army of MDs

At least your endocrinologist was smart enough to know that having a dietician on staff was a good idea. It sounds like the OP's MD was just plain ignorant.

 

[Joyful]

Wow. You would think a health care professional would be more knowledgeable - and caring! I guess not! A video taped MRI sounds a little intimidating to me - I'm kind of a private person too. I still can't believe I'm a part of this forum-it's not like me!

I hear the keto diet is not that different from the paleo - I don't know. I'm doing some form of the paleo diet right now - still waiting to get my books in I've ordered "Practical Paleo" and "Grain Brain"
Like you said, it really isn't that hard, the hardest part is giving up the sugar.

Good luck with everything.

 

[Pricilla]

Was the doc a neurologist or was he an epileptologist? Sounds like your guy was the former, since he wasn't familiar with all the ins and outs of the ketogenic diet. And the fact that he might dismiss you altogether if you hadn't had a positive eeg is ridiculous! A trained epilepsy specialist knows that a positive eeg can help rule in an epilepsy diagnosis, but a negative eeg cannot rule it out. The diagnosis should be made on the basis of he actual symptoms you've been having.

He was a specialist, thats what peeved me, because its the same reaction I got from the first neurologist.

 

[Pricilla]

This is why I'm seeing a traditional Hawaiian healer.

Send him my way!!

 

[Joyful]

I am seeing a naturopath doctor.
He looks at the whole person, finds the cause, and tests you to find out what your body needs.
His practice is in Alabama, but he will travel to your area if enough people want to see him.
Look up Dr. Reed Sainsbury - at healing the cause.com (sorry, I can't post links - just ignore the spaces)
He has healed several people w/ epilepsy and other ailments. All by natural means.
He has helped me w/my seizures alot.
I encourage anyone to read his book "Healing Poisoned Medicine"

 

[Pricilla]

My husband is totally fine with me going natural after I get an MRI and the eeg taken care of. I mentioned acupuncture, natural healing all kinds of things, and he said he was cool with it, but first he wanted to rule out any serious things and to give him peace of mind. And I had to go through the specialist to get these procedures on the way. If I can help it I will not go see him after all this.

 

[Joyful]

Glad to hear that your husband is on board w/ all of this. That's good that he wants to rule out serious things - our husbands do need to have that peace of mind - it helps all the way around, don't 'cha think?
I don't know where I'd be w/o my husband. He has done so much for me in the past, and continues to always be there for me.
They need our support as much as we need theirs.

 

[Cint]

And I had to go through the specialist to get these procedures on the way. If I can help it I will not go see him after all this.

I have a problem with believing this was an epileptologist, since you say he didn't know about the ketogenic diet and then ruled out the possibilities of a negative EEG. Lots of folks with E do have negative EEGs and an epileptologist would know that.

 

[Cint]

He has healed several people w/ epilepsy and other ailments. All by natural means.
He has helped me w/my seizures alot.
I encourage anyone to read his book "Healing Poisoned Medicine"

I didn't know epilepsy could actually be "healed". How does one actually know if they're healed? What if a seizure returns 20-30 years later? Are they healed?

Epilepsy is treatable, not curable, so far.