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Old 06-24-2011, 12:15 PM
searchingforhealth searchingforhealth is offline
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Default Recently diagnosed with PNES

I have just returned from a 3 day stay at mayo clinic where I underwent video eeg. The good news is I do not have epileptic seizures. I feel so much better just being off the keppra! I realize this is a blessing. I've been referred to a neuropsychologist for possible PNES diagnosis. However, I think I am in a bit of denial, and embarrassment, as I can't believe that being in a happy home, happy marriage, good job, etc....that I can't handle stress without having an "episode" or pseudo seizure" or that the physical ailments: numbness, tingling, pain...are from stress. I don't even know what to tell people, I don't want them to think I'm crazy. Is there anyone else out there who was diagnosed with this, sought help and benefited from treatment?
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Old 06-28-2011, 03:14 PM
Jerri in Boston Jerri in Boston is offline
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Join Date: Dec 2006
Location: Boston
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I've become an expert on the subject since my husband has both non epileptic sz and epileptic szs. We went as far as setting up a consultant with Dr. LaFrance in RI but there was some conversation about his office not taking our insurance but our insurance said his office did take it.
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Old 06-28-2011, 08:05 PM
Porkette Porkette is offline
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Join Date: Oct 2006
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Many yrs. ago when I was just a kid my neuro thought I was having PNES sz. after doing a e.e.g. and not finding any problems that would trigger my sz. it wasn't until they did a CT scan and a veeg that they found the brain damage in the right and left temporal lobes. The scar tissue was in so deep that the e.e.g. didn't show anything and my neuro thought I was having PNES sz. but I'm greatful I had the veeg to show them I was having sz. and I didn't have any mental problems. Here's wishing all of you well and May God Bless You!

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Old 07-06-2011, 01:35 PM
zep4141 zep4141 is offline
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Join Date: Oct 2006
Posts: 80

This very long article is informative in that it provided many references to the medical teams that are investigating the phenomena. I recommend researching the doctors who are involved in this article to get a better understanding about PNES. Thank you for posting this information.
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Old 08-10-2011, 05:23 PM
Mosel Mosel is offline
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Join Date: Feb 2009
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Default Pnes

Yah, I've got it too. Late onset. Absolutely love clonazepam. I had to convince my GP to give it a try. Just 1 mg. I enjoy explaining these wonderful experiences to people by asking them if they've ever looked over a bridge and their legs turned to jello. Your body reacts to what the mind is perceiving. Psychosomatics and all that good stuff. However, I'm a lot more interested in the somatopsychic contribution. Why do some people suffer PTSD and others don't when they all witnessed/experienced the same trauma? Is there a physical component that affects/controls how we experience matters? Is it simply brain chemistry that makes some of us prone to this condition or is there some other organic cause? The more I've researched this disorder the more questions I have.

Love this website...
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