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Need help with diagnosis issues
Wed, 10/17/2018 - 12:53I really need some help. For the past 15+ years I've had temporal lobe seizures and didn't have health insurance to get tests etc. Now that I have insurance and am able to see a neurologist and get necessary tests I've hit a brick wall even so. My dilemma is that he did put in my records that I have had temporal lobe seizures, but the EEG was normal, and the MRI results came back today as 'normal,' and he says he doesn't need to see me for a follow up and to just call them if I have another episode. Just like that. Dropped the ball. And I'm so depressed and unsure of what to do next. It bothers me to be left hanging, not knowing when it will happen again. It happened twice while driving, but that was several years ago. I don't go out often due to other health issues, but still.... it worries me.
Quick BG: I've been having these episodes for over 15 years now, but I was on Topamax for 2.5 years (for off label use for pain) and slowly weaned off and have been completely off of the Topamax for 2.5 years. Not sure if that's what put things into remission or what, but the last two episodes I had were just the beginning symptoms and not the whole full-blown thing. Not sure if that makes any sense or not. It was like I had the physical, initial 'warnings' but it stopped there.
Has anyone been diagnosed with TLE with normal MRI and EEG? Is this a normal practice to be simply left hanging and waiting for a seizure to happen before moving forward? I'm confused and very disappointed, because I was hoping I wouldn't have to just wait for the other shoe to drop.
Thanks in advance for any suggestions/advice. So sorry for the long post... just so at my wits end with this.
Comments
In the same boat , except I
Submitted by Silverfan on Sat, 2018-10-20 - 09:41
In the same boat , except I’ve had insurance 15 years and doctors still don’t help. They call it paradoxical epilepsy which just means you have seizures and they have no idea why but in a way that makes them sound smart. The epilepsy center in TX is great or so I heard and may be able to get a more specific cause. It probably has to to with the release of certain basic receptor eciting compounds and inhibitors like GABA or dopamine or Takikinins
I supplement natural GABA and
Submitted by Silverfan on Sat, 2018-10-20 - 09:41
I supplement natural GABA and CBD to try and calm my brains over excitement. Good luck but without genetic testing or in depth diagnostics involving brain and spinal fluid it may be a hard diagnosis.https://en.m.wikipedia.org/wiki/Tachykininhttps://en.m.wikipedia.org/wiki/Substance_P
In the same boat , except I
Submitted by Silverfan on Sat, 2018-10-20 - 09:36
In the same boat , except I’ve had insurance 15 years and doctors still don’t help. They call it paradoxical epilepsy which just means you have seizures and they have no idea why but in a way that makes them sound smart. The epilepsy center in TX is great or so I heard and may be able to get a more specific cause. It probably has to to with the release of certain basic receptor eciting compounds and inhibitors like GABA or dopamine or Takikinins