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-   -   Hallucination-like experiences? Seizures, perhaps? Scared and seeking input. (https://www.neurotalk.org/epilepsy/177426-hallucination-experiences-seizures-scared-seeking-input.html)

medicalmystery7 10-05-2012 08:31 AM

Quote:

Originally Posted by mrsD (Post 919942)
So.... I think you have two obvious options here:

1) pursue the epilepsy angle...and get the proper testing from a specialist in epilepsy.

2) find an integrative doctor...this is a new specialty and these types of doctors see the "whole" person. Google your location and the word "integrative" doctor or specialist.

Isn't it possible to have seizures without being classified as an epileptic, though?

I wouldn't even know how to get started with seeing an integrative doctor because, as I said earlier, I think my GP is getting sick of me asking for referrals. Within the past week, I've already asked her for a referral to a cardiologist and to a new neurologist. There is an "integrative medicine" doctor who is somehow associated with my acupuncturist, but I'm really confused on their connection. The clinic website mentions the both of them in the "About Us" section, but I've never seen the other guy around the clinic. I guess I can ask acu-man, but I don't want to come across as "I don't really think you know what you're doing, so why don't you tell me more about this other guy?" Apparently, I care too much about what practitioners think of me.

Mark in Idaho 10-05-2012 09:41 PM

Please try to avoid needing a diagnostic term. Epilepsy is a very broadly used term . My doctor said my seizures were not epilepsy but did not define them otherwise. I understand you desire to not be diagnosed as epileptic. It has a bad history.

If you are not pursuing other angles, a specialist in integrative medicine would be good. If you have a referral from your acupuncturist, you should give it a try.

Just try to do as mrsD said and go easy with the list of symptoms. There is another term doctors use, A cyberchondriac. It is a hypochondriac who researches and defines their symptoms and possible disease on the internet.

I got somatoform written in my medical record and struggled to get any doctor to pay attention ever since.

Give some general symptoms and let the doctor ask the questions before you say anything else. Let the doctor discover your symptoms, if you can.

Darlene 10-06-2012 12:08 AM

When I was little I had a neuro tell I did not have epilepsy, but I had a scar on my brain. Doing my childhood that was what I went with. Then when I had a surgery to remove a part of my brain the Epileptologist said it was at times the same. Lucky for me I did have the surgery, they removed the scar, and since then I have not had a seizure. My thoughts and prayers are with you. :hug:

medicalmystery7 10-08-2012 04:09 AM

Thanks for the responses, all. I don't have anything against being diagnosed with epilepsy if I have it. I just think it's a tad presumptive to request to see an epileptologist when I have no clue if I have it. I don't see how that's much different than telling my doctor I need a referral to a cancer center because I think I have cancer based on articles I read on the Internet. Especially since I've never had a single doctor take me seriously when expressing my concern that some of my symptoms may be related to seizure activitiy.

Anyway, I hope my GP gets back to me soon with the referral to the new neurologist. And I hope she'll let me try having an MRI done with and without contrast again (Did I ever explain that situation? I only had a CT scan done without contrast). I'm not convinced that there isn't some type of tumor or lesion or something on my brain that's causing a specific spot on my head to hurt 24/7 in addition to all of these cognitive problems. In any event, I hope someone can come up with something to do to help me soon; I hate literally having nothing to do other than cry or, if I'm lucky and able to, sleep so I don't have to think about everything.

*reminder to self to pick up the B12 tomorrow after my acupuncture appointment*

Mark in Idaho 10-08-2012 07:00 PM

mystery,

Let the specialist choose the type of diagnostics to do. An MRI with contrast or an MRI/MRA or even PET can all image different things at different resolutions. The MRI/MRA is a simple non-invasive imaging system.

A Diffusion Tensor Image is a higher resolution MRI that is also use for specific symptoms.

medicalmystery7 10-08-2012 07:47 PM

My internist and neurologist both wanted to do MRIs with and without contrast, but I couldn't do it at the time. It's a long story, but basically, I hid my symptoms and avoided doctors for about seven years because, if I had a brain tumor, I didn't want to know about it because I didn't want to have brain surgery. (and back when I was still under eighteen, it could have been forced on me) So I spent so much time avoiding the diagnostic testing that when I was finally confronted with having it done, I went into panic mode and just said forget it, I'll just live like this. So my neuro said we could try a CT scan since it would be over much quicker. Then the nurse freaked me out by telling me about all of the side effects that injecting the contrast into my veins could cause, so I didn't want to do that either.


I'm past that not wanting to know stage now, though, which is why I said I want to see if they'll let me try the MRI again. I saw the images from my CT scan without contrast, and they're such poor-quality images. My dad looked at them too and said, "There's no way they can diagnose or rule out anything with those."

In other news, bought some more methylcobalamin today. Kind of worries me that I'm now taking a B-complex, the high-dose methylcobamin supplements, and a multi-vitamin that contains B12, but you all don't seem to think it's a problem, so that's good.

mrsD 10-09-2012 06:53 AM

There is no upper limit to B12 taken as a supplement, listed by the FDA.
Also orally only 1% is absorbed per dose. So while it looks like alot on paper, it is really small in reality.

Ideally it is 1%...if you take it on an empty stomach. If you don't, nothing may be absorbed.

medicalmystery7 10-09-2012 08:29 AM

Quote:

Originally Posted by mrsD (Post 921052)
There is no upper limit to B12 taken as a supplement, listed by the FDA.
Also orally only 1% is absorbed per dose. So while it looks like alot on paper, it is really small in reality.

Ideally it is 1%...if you take it on an empty stomach. If you don't, nothing may be absorbed.

1%? That's crazy...dang.

medicalmystery7 10-09-2012 03:22 PM

Oh, and feel free to move this thread over to the brain trauma subforum or wherever it best belongs since it's kind of veered off the topic of seizures if you want, mods.

Mark in Idaho 10-09-2012 03:33 PM

mystery,

It sounds like you need to get a grasp on the applicable information. If you look at your B complex, multi-vitamin and methylcobalamin, you can find out how much total B-12 you are taking. Since the B-12 in the multi and B-complex has low absorption, it should be added up separate from the methylcobalamin. Note that mcg is 1/1000th of mg. 1 mg is 1000 mcg. The B-complex likely has 50 mcg of B-12. The multi likely has 4 to 10 mcg of B-12.

I take 380 mcgs of B-12 daily. My blood B-12 is about 1000 pcg/mL which is good.

When you get anxious about a test's side-effects, you need to look at the incidence of that side-effect. Most major side-effects only effect a few out of a hundred patients if not much less.

I have had CT's, MRI's, MRI/MRA, PET, old school brain scan with mercury contrast (1970), EEG's qEEG's etc. They are nothing to be afraid of.

They often rule out the scary problems right away. Tumors usually show up easily so they are easily ruled out. It is finding the other conditions that can be difficult. In my case, they could not image any problems or defects. Only the qEEG showed a problem. A qEEG is a harmless procedure similar to a generic EEG.

You tendency for anxiety tells me you need to be up on brain vitamins and supplements. The brain is much better with anxiety when it gets good brain nutrition.

My best to you.


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