Doc thinks I am wasting his time?

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JRuner

JRuner

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My doc seems like he believes I am wasting his time because I had one small twitch and no irregular brain waves on my video EEG. As of yesterday evening I had a seizure with side to side swaying for about a minute where my eyes were closed for the entire time and I would not answer my wife. I can not remember this being so long and could talk without confusion, but with nausea and migraine after it. Then four small ones in my sleep last night.

Doc said if we want to "I can do another video EEG but I probaly won't see irregular brain waves since I already told you they are non epileptic events."

Thoughts?

I think I should not waste my time with another EEG.

John Runer
 
I think if you had a seizure while hooked up to the EEG the first time & no irregular brain waves were visible to the neurologist then I would doubt the EEG would record anything unusual the 2nd time.

However, if you didn't have a seizure the first time then you might have one this time & it might show up. In the end you have the final say whether or not to have another EEG but do you really not think you should have another EEG or do you just want to avoid conflict with your neurologist?

You have to remember that even people that do have seizures while hooked up to an EEG don't always show up, that doesn't necessarily mean your seizures are due to PTSD (though it is possible).
 
I do not like conflict and feel that because none of the abnormal brain waves showed up like they did in my right temporal lobe as child I would just be wasting time and money. I recieve a lot of pulled muscles in my face neck stomach and back with these but if the EEGS are clear than whats the point of more. Th doc is the one that cancelled my follow up appointment saying if you want I guess we can do another EEG with probaly the same results, he is less than supportive no matter what events these are.

John Runer
 
If your neurologist makes you feel that uncomfortable maybe you should find one that is more supportive. I've been through enough neurologists with similar attitudes that I just keep in mind that their job is to find what's wrong with me & support me in ways that will lessen/control my seizures. If they're not supportive then they're not doing their job & I won't benefit from seeing them.
 
John,

Is there any way you could get a different neuro to evaluate your situation and go over your previous EEGs? Sometimes different eyes make a better judgment. If you were having seizures from the right temporal lobe as a child and have they returned, they may show up on the EEG eventually.
 
John,

It really may be time for a second neurologist. This one isn't providing you with the help and support you need. A second opinion is ALWAYS a good idea.

Hang in there.
 
It is almost impossible for someone to have a GM/Grand-Mal/Tonic clonic seizure while having EEG and it now show up. The electrical disturbance is happening on both sides of the brain, definitely making it very easy for electrical activity to be picked up on EEG. Usually smaller areas or smaller complex partial seizures may be hard to see.
You might be having seizures, just not one associated with abnormal electrical discharge or Epilepsy.
Could be cardiological conditions, emotional/psychological condition, or other medical condition causing whats going on with you.

Wish you well, and you have the right to ask the neuro for another opinion or talk about another EEG in an Epilepsy clinic..

Be safe,
Crystal
 
John...my question is, is your doctor saying that your right TLE did not exist either? The scarring should still show on an MRI from that I would think, I know mine does. Maybe I understand that all wrong and scarring is only associated with brain injuries?

I have left TLE with old scarring DEEP in the temporal lobe according to the doc. I have had numerous EEGs over the past 12 years, all of which were negative until the last one. The last one was abnormal and showed a bunch of spikes and whatever on the left side. The next one could be normal again, who knows...I'll found out next week, lol.
I have Cps that generalize amongst others. I can't remember if I had one right before my EEG or right after though.
 
I don't know if he believes my childhood epilepsy was real or not. My old medical records which he did not want are about six pages my mom held on to showing huge EEG spikes in my right temporal lobe and saying that those would spread into gran mals. I personally think these are psychogenic and don't understand why he would cancel my appointment to get another EEG. It is possible that these are not just emotional and are deep in the brain because I had a cousin with childhood epilepsy go away then come back and not show on EEG until he had eight gran mals in a day.

As far has scarring I do not think I have any but he also got me confused with another patient briefly when talking about my MRI being clear. My mom is elderly and does not remember where I hit my head on the concrete as child but that is when my gran mals started and I had bad concussion a couple of years ago but nothing started then. I am going to get a second opinion if medicaid and medicare allow it. At the very least I need a doctor to tell me what to do wether my seizures are epileptic or not! I am tired of shaking day and night with no treatment plan.

Thanks,

John Runer
 
JRuner said:
... My old medical records which he did not want ...
Click to expand...

Boy do I have a problem with this. A doctor MUST have a medical history in order to make a correct diagnosis or else it's like getting a diagnosis from the internet. Any time your doctor makes you feel unsupported and like he could care less about you, it's time to move on!
I had a neuro who did not like complicated cases or headstrong patients. He was the same neuro for several members of our epilepsy support group. One by one he kicked the difficult cases out of his service. He was as cold as ice to everyone and even treated his staff like they were bugs. I was so glad when I got a new neuro, made me realize what an ass he was.
 
Don't let any doctor make you feel horrible about finding answers to your situation. However, do make sure you aren't reading something in his behavior that isn't there. You might discuss this with your doctor so that he understands where you are emotionally.

Do consider PNES as your comment that your eyes were shut was something I picked up on.

Eyes open or closed? Using data from video-EEG monitoring, researchers found that:
50 of 52 PNES patients (96%) closed their eyes during the seizure
152 of 156 of ES patients (97%) had their eyes open at the beginning of their seizures.
Click to expand...


http://www.jfponline.com/Pages.asp?AID=4554
 
I will be seeing DR. Robert Wechsler the end of June. Even his staff was mores supportive than my doctor and I did tell them I agree these are non epileptic and they referred me to counseling until their doc can follow up and make sure the are not both. Dr. Weschler is the head of the Idaho Epilepsy center and I believe he will confirm these are not epilepsy but make sure i am dealing with whatever they are properly.

John Runer
 
Excellent! John, this is a great plan for going ahead. I'm really happy that you found a new doc, and are getting counseling, too. I'm feeling much better about things for you. Are you?

:woot:
 
Hey John,
if the doc thinks you are wasting his time, you are more than likely just wasting your own. he is a lazy and closed minded doctor by the sounds of it, and I think you should get proactive on finding one that is willing to support you in your healing.
 
John,

I'm still glad you are going to a different doc. Even if the seizures aren't epilepsy, there are many kinds of non-epileptic seizures, and you need to be checked out for the ones that are reasonably possible, given your symptoms. Psychogenic seizures are just one. There are lots of possibilities, but here are three:

  • Hemiplegic migraines
  • Transient Ischemic Attacks (mini-strokes)
  • Hypoglycemia, etc.

Check this out as an example: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1373644/

Let us know how things go, okay?
 
Thank you for all the replies, after talking to the Idaho Epilepsy Foundation I felt less like fool and more like a self advocate. I am working hard to find a counselor and my nurse practioner here is also looking its not that easy in a rural area. If I can't find one in Salmon Idaho I will try to travel to Idaho Falls as much as I can afford to. Just having the new docs staff treat me like someone who is suffering and repsect the previous docs diagnoses is great they didn't treat me like a problem but a person, it was wonderful!

I want to heal if its not medical which I persomally think its psychogenic great, if it is medical I will deal with that too, but ripping my muscles and frequent migraines are something I hope to live without and I will do whatever my doc or counselor tell me if it can heal me, but I just have to know what do. I listen to my docs I just wish more would listen to me when I say what now?

John Runer
 
So glad to hear you will be seeing a different doctor John. Hopefully they will be able to find a solution to the seizures you are having and get them under control, regardless of what is causing them :)
 
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