I am so confused! :/

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Mellismom

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I really need some help from you guys right now. This is my story short: years ago I started having different seizures. I was examined thoroughly (only because of one type of seizure because I didn't tell anyone about the others) but eeg, ct and whatever else I had came back clear and there wasn't really done anything else. I was sent home again and it was all forgotten... Except I kept having the seizures. Back to the now:

Recently my husband and I talked about driver's licens. I don't have one because of the seizures. I have a new doc now and she was much more understanding than the old one so I told her about the other seizures and said she that by the description she thought it was epilepsy. I went to see a neuro who only had the information about me that scans and eeg were clear. He seemed to have decided already it wasn't epilepsy before I came and he didn't listen much. Then he said it wasn't epilepsy but still I had to take eeg again to be sure. Well, the eeg wasn't clear this time, there was something. Now we're getting somewhere. :clap:

Then the neuro listened to us and suddenly he was absolute positive it was epilepsy even though we said the very same things last time we talked! Still he mentioned pnes - in case an mri came back clear?! Does an mri really have to show something? :ponder:

Next thing that happens is the mri is clear and then my phone rings. I fail to take it, call back the number and it is the neuro's secretairy. She informs me that the neuro don't know what is wrong with me why I have to go to a hospital for further examinations... Can he decide?!

I'm now waiting for a letter from that hospital. Very confused. Don't know if it is epilepsy or not and really just thought it was enough that the eeg showed something. Appearently it isn't? If it is not epilepsy what else can it be then that looks like and shows signs of epilepsy on an eeg?

Good day to you,
Mellismom
 
Hi Mellismom, welcome to CWE!

1. A negative EEG doesn't rule out epilepsy, but a positive one can help rule in a provisional epilepsy diagnosis made on the basis of clinical symptoms (i.e. the actual seizures). A positive EEG is not required for an epilepsy diagnosis, but it's nice to have one if there's any doubt, or if your neurologist is unable/unwilling/too incompetent to make a diagnosis otherwise.

2. An MRI can show if there is a structural or vascular issue (like a lesion or scar) causing the seizures/symptoms. It's clear for most of us who have epilepsy, so it doesn't have a crucial bearing on whether or not an epilepsy diagnosis is made.

To be honest, I think you may need to push to see a different neurologist -- preferably an epileptologist -- who is more experienced with epilepsy.

Best,
Nakamova
 
Nakamova said:
To be honest, I think you may need to push to see a different neurologist -- preferably an epileptologist -- who is more experienced with epilepsy.
Click to expand...

Hi Mellismom and welcome,

:agree: An epileptologist, a dr. who specializes in epilepsy and will be much more helpful in your situation. Sounds like this dr. is giving you the run around and you certainly don't need this kind of treatment with epilepsy. Sometimes tho, it takes a while to find the right meds that will work for you. Good luck.
 
I would probably either be looking for a new dr, who else see what the hopsital can do as far as further testing goes. Ive had to switch neurologists just this year. The neurologist I was seeing prior is a epilpetologist, and just because I didnt have a huge grand mal seizure, was convinced that I had psych non epilpetic seizures. I was put back on Keppra XR, which after he referred me to a psych dr, said didnt make sense why he would do that becuase Keppra treats epileptic seizures, and not non epileptic seizures. As time went on, I had some break through seizures this year and was told this to the nurse of the neuro. She said he wasnt going to see these seizures as real epileptic seizures and to get a second opinion. In March of this year I saw another neuro and he said they are in deep epileptic seizures. I was put on Carbatrol at a low dose, and its helped make the seizures be under control. I was dx'd with Epilepsy at the age of 18 months, and have had all clean MRIs but my EEGs come back abnormal. Waves and patterns indicating Left Temporal lobe epilepsy. Even after having a abnormal EEG with this last neuro, he still threw that out and said it wasnt epileptic seizures. Some doctors just dont know what the hell they are doing. I will pray you find a good neuro that will help you!
 
A PNES diagnosis really stinks. I had a neurologist who who was leaning that way in his diagnoses for two years because he'd never witnessed a seizure, I live alone and my only witness was my Mum (and she only saw 2), I never had a tonic clonic, and seizures I did describe were "weird". He took an Loa and I got referred to a seizure specialist who recommended tests and I finally got a diagnosis of FLE. Don't overlook the importance of testing or getting second or even third opinions. You know yourself better than anyone. Also, if your doctor was convinced of PNES, he wouldn't have put you on an ADD (in my opinion).
Good luck!
 
Thank you all for welcoming me and for advice. I should probably get a new neuro then if possible. Right now I'm waiting for that letter and I hope they know what they are doing on the hospital. If they do find something and it makes my neuro diagnose me with epilepsy I'm not sure I want to be treated by him because he doesn't seem to know what he's doing. I don't know if he's convinced I have pnes but I don't get why he said clear mri could mean pnes when eeg showed abnormalities. I know you can have epilepsy even with a clear eeg. I understand that tests are important when you diagnose one with epilepsy but they just seem to be more important to him than the description of the seizures. I might have tle and my seizures are weird too when I describe them but my husband was with me and told the neuro what they looked like both times.
 
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You're not stupid. Sorry, that's my spell check for you lol I meant A E D. There, fooled with the spaces :)
 
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