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Advice with Diagnosis

Sun, 05/15/2016 - 13:52
I first want to start by saying I've been a member for a while but this is my first post so please forgive me if this is in the wrong place. I also want to apologize for this being so long, but it really must be to really explain everything that has gone on. I'm having a hard time getting a diagnosis for my problem and I have a feeling I'm being sent in the wrong direction and want a second unbiased opinion from others with similar experiences. My episodes consist of a strong sense of deja vu even if I know I've never done that thing before, followed by severe nausea (sometimes puking), memory loss, and on occasion, during the 20-35 seconds I can't read or remember what I was saying prior and will just keep repeating "uhm". Those times are more rare, but they have happened a hand full of times though. This started in my 9th grade year in high school and I'm 21 now. I saw a neurologist and he ordered EEG's and according to him he saw enough to diagnose me with complex partial TLE. We left this neuro due to some terrible customer service issues and the new neurologist that I'm seeing ordered a new EEG said the eegs were clear and told me there is absolutely no way I'm having any seizures. The new neurologist is claiming it is caused by anxiety or miagraines. I'm not dismissing this possibility but my concerns are I do have epilepsy that runs in my dad's side of the family and I have recently seen that you can have seizures and it not show up on an EEG. Also where we live, unfortunately, neurologist are kinda out for your money so you kinda have to watch your back. Both neurologist I have seen have horrible things said about them but that's who I get referred to. We are going to see an out of town neuro next but I wanted someone else's advice. Thanks for any help in advance!

Comments

Two different neurologists

Submitted by just_joe on Sun, 2016-05-15 - 14:51
Two different neurologists seein information on two different EEG'sOk Leary TThe first neurologist saw enough to diagnosis of TLE woth cpmplex partial seizures. Meanind on hte EEG he had done there were abnormalities coming from one of your temporal lobe. What you told him also told him th seizures wer complex partial.The secone neurologist told you they weren't seizures. Which means in hte EEG he had done there were no abnolmalities in. Which is why he is laying it on anziety. Both of the neurologists are reading from their EEG's and making a determination from what is there in front of them.Now what you do not know is a person can have many different EEG's. Personally I had 20-25 and they all came back normal. But I was still having seizures. On was a Grande Mal. todays Tonic=Clonic. So do it have seizures and epilepsy or not considering I had EEG's that came back normal? No another EEG in which I fell asleep in showed abnormalities in. By seeing where they came from the neurologists looked closer in tat area of the MRI of the 60's. That closer look showed them I have scar tissue in the left lobes of my brain.Which meansyour first neurologist was right. If the second neurologist had the same EEG as the first his diagnosis might have been the same as the first. The test is a part of your medical file and yours to get copies of. Get them and take them with you to the out of town neurologist.Now as for epilepsy running in the family. They will check that but over the years they have found that epilepsy does run in families but it is rare that it does. I know. They questioned about it in my family. Until they found the scar tissue. When my cousin was diagnosed with epilepsy thy were asked if it awas in the family. Well the answer was YES. But when they asked about my epilepsy they found out it wasn't geneticly transferedOMG seeing horriable things about doctors does make one think more. I have been with th same group of neurologists since 1971. Ths last one retired last July. Now I did read some of them because I wanted to know why my Doc would have a patient post something bad about him. After reading a few I stopped since some were about the medication not working. Finding out the medications were not taken as directer. Writting about him in bad lite because of the result of a test which all he did was ask them to have it done. Can reading  teh result of a test change the results of that test?? It is like all the posts about a medication. Most of those posts about a medication not working right or about a side effect are generally post by 5-8% of the people taking it that have a side effect. Which means that you will not see a post from the 92-95% of the people who have had no problems with it.

OKYou have had episodes for

Submitted by just_joe on Mon, 2016-05-16 - 10:56
OKYou have had episodes for some time and you saw a neurologist who ran an EEG, The results came back and he saw enough (meaning abnormalities were seen) in the EEG to diagnose TLE with complex partial seizures. Fine lets stop there for now,The EEG is a brain wave test which is used to see the electrical output coming from your brain. In the EEG he saw what he needed to make the diagnosis. It was the EEG and your information that made him come up with that diagnosis.Something happened with the customer service dept.You went to another neurologist who ran his own EEG who said the EEG was clear. Meaning there were no abnormalties. Which gave him his diagnosis.Now you also posted you have seen posts that show a person can have an EEG that was normal and still have epilepsy.So lets that it a step at a timeOne EEG showed abnormalities (electrical output which can start a seozire. The new EEG showed nothing. You have had episodes in the past over the years.All it takes to diagnose epilepsy is 2 seizures. No tests are needed. The EEG shows the neurologists where the electrical output is coming from. For the first Neurologist it was the Temporal Lobe (not sure whice side of the brain) the type of seizure noted can land in complex partial seizures. The thing to think about is what the newer neurologist would have come up with if he/she had looked at th first EEG,Now some history from me. I had 20-25 different EEG's and all had come back normal. I had a grand mal seizure. I had been written up for daydreaming in class (petite mal and focal motor seizures) yet all of those EEG's were normal. The last test run in a hospital setting was anothe EEG i which I fell asleep in. That EEG came back with abnormalities in the left lobes of my brain. The neurologists then went to the normal MRI and in looking closer in that area they found scared brain tissue. SO I had 20-25 different EEG's that were normal but still had seizure. I had one EEG come back with abnormalities. The thing found is causing electrical impulses ti hit wrong in my brain. That wrong hit causes a chain reaction (the seizure). Should I go with the 20-25 normal EEG's or the 1 EEEG???If you want to go to th third neurologist but also take the EEG's from both the other neurologists.As for seeing horriable things said about the doctors.. It does happen. Just like the posts about medications not workiing. Those posts are from people who didn't like the diagnosis or have listened to the stigma around epilepsy and they don't want th even think they have it. Doc had had some posted about him. He is th best neurologist I have had. I have been with the same group of neurologists since 1971. He wa answering some of my questions when my neurologist was out back in the 80's. Any and all doctors have posts weitten about how bad things are. Oh and as for customer seervice troubles Doc has some but my issues were resolved and they fixed the problem in customer service and they have been great since then. If I like the doc and what they did and how they hepled I stay with th edoc and work to get the other departments streightened out.I hope this helpsJoe

If the electrodes are not set

Submitted by just_joe on Tue, 2016-05-17 - 14:49
If the electrodes are not set right they might not pick up the output too.

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