I dont know if i have Epilepsy or not. I recently got ahold of my medical records and on many pages it has Epilepsy as a condition diagnosed though my EEG and CT scans were Clear. I do have seizures but they are NOS and no one knows why or where they are coming from. I do have an auto immune disorder being researched at the moment and was wondering if this would go hand in hand with that as well. this is terrifying me at the moment. i am so close to tears writhing this. Can anyone give me any insight? Currently im trying to get an MRI scheduled or something but im lost at what to do next.

I dont know if i have Epilepsy or not. I recently got ahold of my medical records and on many pages it has Epilepsy as a condition diagnosed though my EEG and CT scans were Clear. I do have seizures but they are NOS and no one knows why or where they are coming from. I do have an auto immune disorder being researched at the moment and was wondering if this would go hand in hand with that as well. this is terrifying me at the moment. i am so close to tears writhing this. Can anyone give me any insight? Currently im trying to get an MRI scheduled or something but im lost at what to do next.

I would go to the doctor who ordered your EEG and ask him to explain why your records indicate Epilepsy. You need to ask questions until you get some answers. I don't know all your details, of course, but I would be working with a Neurologist and having all the neccessary tests done to alleviate your fears. Let us know what happens.

Unfortunately none of us here can tell you whether or not you have epilepsy since we aren't your doctors :(
A lot of us can tell you first hand that EEGs and MRIs can come back clear but you can still have epilepsy (me! lol), so I wouldn't base it off of that.
Like Critter said, your best bet is to call your doctor and tell them that you want an explanation. Don't be afraid- this is your health you're talking about and they are required by law to explain anything to you that you don't understand. Drs tend to be short with us because they're in a hurry and whatnot, but we have every right to ask questions about what we see- especially if it concerns a diagnosis you weren't even AWARE that you had!
As far as I know, you need to be notified of a diagnosis given to you at any point in time, whether it be by the Dr or nurse.

... yay, can you tell who's in training to work in a hospital? lol

Replying again real quick! :)

- Don't be afraid if you do have epilepsy. It's only a technical term for your seizures that you're already having.
And, as far as I know, epilepsy is the term for a person who has seizures that cannot be traced back to something (ie: trauma, illness, birth defect, etc. etc.). As of right now my seizures cant be traced, therefore I have epilepsy.
Most likely this is why they diagnosed you with it until they get further details.

Well i suggested to my dr the 21st that i wanted an MRI, and yesterday (28th) My rheumatologist is going to write to my dr to have an MRI done as well so hopefully it will be done. If it comes back clear, then so be it but it wont explain all my other probs as well (that dont so go here). Thanks guys for the lift of confidence, i get to see my doc in 7 weeks so yeah....

Hi Kitten

It sounds like a whole heaps of confusion is going on here. You do need to tell your doc you don't understand some of the stuff you're being "diagnosed" with. No question is ever too stupid to ask and you're not wasting her/her time by asking it, it's your right, and it's imperative you know what's going on with your health. I was lucky in that I got a straight diagnosis quickly because there was a lot of activity on my first eeg and it was a text book result for my type of epilepsy. However if your tests come out clear it's perhaps a good idea to keep a diary of all seizures or episodes you have, what times they happened at, and if you can think of any possible trigger, jot that down too. Don't be scared to write down ideas that you may think are stupid, and be honest too - if you've had drink or drugs (I'm not suggesting you take drugs, but if you did) and write that down - it's all confidential. All of this makes diagnosis so much easier.

Good luck!
Eilidh
x

And by the way is it coeliac's disease you are being tested for? There is some research that connects coeliac's with seizures. Auto-immune disorders are often linked with each other - my Mum has vitiligo, addison's disease and coeliac's disease and is expected to develop diabetes in later years... (these are all auto-immune disorders). Her brother and cousin both have coeliac's and the same cousin has seizures but not epilepsy (my epilepsy is unrelated). So talking with your doctor about these links may be a good idea. You can get some more advice about these conditions on other boards here.

Good luck with both of these!
Eilidh.
x

You deserve answers to questions you have about your body. That's just a basic right. Doctors don't always realize that what they put into charts reaches patients, and they should explain things the same way they put them in writing (meaning tell you what they think, in plain English-- it's said that only about 20% of what a doc says during a diagnostic results appointment even sinks in- it's just normal to be on edge when getting results- personally, I think that patients should be given printed info on anything the doc adds to the chart, whether it be labwork, tests, diagonsis, etc, but that's just in my perfect little world !!!). Keep pushing for results, and if you don't get them, get a different doctor- you're the customer.

I just want it to be known that this summer I worked at a summer camp for epileptic kids. there were many kids there who were epileptic, spent up to 5-10 years without a seizure but were still considered epileptics

Ethan

I do have an auto immune disorder being researched at the moment and was wondering if this would go hand in hand with that as well. this is terrifying me at the moment. i am so close to tears writhing this. Can anyone give me any insight? Currently im trying to get an MRI scheduled or something but im lost at what to do next.

Kitten,
I am also not sure as to whether or not my neurologic symptoms are due to epilepsy or some other brain or neurologic issue. You wrote that your doctors are investigating auto-immune issues as well. Depending on which state in the country you live in, people in northeastern, southern and some western states are at risk for tick borne diseases. Since you have a number of medical issues (and I am assuming fatigue and or lameness is a symptom since you are seeing a rheumatologist) I would make sure that your doctors have tested you for lyme disease and ehrlichiosis (there are many types of ehrlichiosis such as e. equi and rocky mounted spotted fever). These diseases can cause many MANY symptoms including all sorts of neurologic problems. I hope that some of this information is helpful... otherwise the advice from other members has been fantastic. Keep your head up honey!
Karen

Also remember, they are only doctors and can only go by what they are told and taught. I had one doctor admit that I knew my body better so if I felt the dosage was too high then he was okay with lowering it. ( I had cut my dosage in half on my own -do not do- and had been seizure free for over a year.) I was extremely fearful as to what he would say when I told him and that was the response I got. I was floored because I thought for sure he would be angry. After my last seizure I just became very aware of what, where, how I was feeling and what else could be a factor. Of course I have had to have my dosage increased because of my age going up but I still don't feel as dopey. Good Luck and No Fear. Just Be Aware.

Kitten,
I am also not sure as to whether or not my neurologic symptoms are due to epilepsy or some other brain or neurologic issue. You wrote that your doctors are investigating auto-immune issues as well. Depending on which state in the country you live in, people in northeastern, southern and some western states are at risk for tick borne diseases. Since you have a number of medical issues (and I am assuming fatigue and or lameness is a symptom since you are seeing a rheumatologist) I would make sure that your doctors have tested you for lyme disease and ehrlichiosis (there are many types of ehrlichiosis such as e. equi and rocky mounted spotted fever). These diseases can cause many MANY symptoms including all sorts of neurologic problems. I hope that some of this information is helpful... otherwise the advice from other members has been fantastic. Keep your head up honey!
Karen


There are many issues that neurologist deal with that have nothing to do with epilepsy. The only one I can think of is I have heard of some neurologist who work with pqople who are LD bur not epileptic