Hi! Everyone

[CathyW]

I signed up here a few years ago, but was not very active due to numerous health issues which have only gotten worse.
I didn't mean to ignore anyone so if I never got the chance to respond please don't be offended by that.
I am not on computer often.
I have a question that perhaps someone could help me with. I had a wonderful neurologist that diagnosed me with Left Frontal Temporal Lobe seizures I truly thought that doctor was great. Due to Insurance changes & long trip to see him. I just recently seen a "new" neurologist. He kept me on same seizure med, but had me do a 48 hr Ambulatory EEG. When I followed up with him he said you don't have seizures?? I replied but I am on meds & if they are under control the EEG should be normal. He replied NO meds or not there would be abnormal spikes he said it's nothing except anxiety, panic or excessive worry. I don't buy that & I really wish now I had never told him I had anxiety. I am positive that my former neurologist wouldn't have pin pointed the seizures if they were not there after two EEG's nor would he have put me on medication.
I would appreciate any suggestions
Thanks,
Cathy

 

[Jeanbean]

Hi Cathy,
It is very frustrating to have a doctor tell you information that doesn't seem to be true. Is the new doctor an epileptologist? I found traveling by train/cab to my epileptologist has been worth it even though it's 3 hours. Is there someone else you can see on your current insurance? Do you have medical records from the doctor who diagnosed you with temporal lobe seizures? Did he do EEGS? I would get all of your records including the most current and find someone else if that is possible. I am guessing you were having seizures since he put you on anti-seizure medications. We have to advocate for ourselves and I hope you do that as you are worth it. I am on 2 meds have had two video eegs for seizures in patient. Good wishes to you and I hope you find the answers you need. Jeanne

 

[Nakamova]

Hey CathyW --

The new neuro is wrong. If your meds are controlling your seizures, then it's definitely possible for the EEG to come up negative. That's been the case with me.

It's also unusual for the new neuro to do a 48hr ambulatory EEG if you've already been diagnosed with epilepsy. What was he hoping to find?

Agree with Jeanbean that you should see if there's another doc you could see.

 

[cadsgj]

Hello Cathy. Feel sorry for you. Years ago I went to a new neurologist and he sent me in for an EEG, he called me in afterwards and said all was good after my two surgeries... no seizures. Stop taking both your seizure medications. Blew my mind. Shocked. Went to my current neurologist and he warned me "not" to quit either medication. I strongly believe that people who live in the seizure world need to best they can feel strong and confident with their doctors and specialists.

My fingers and hope are strong for you here.

GJ

 

[acshuman]

Some So-Called Experts HAVE To Be Questioned!

Any time a doctor tells someone to just stop taking their medications without giving them a strict plan to follow when the patient is being weaned off of a med, that doctor is showing that they don't have any idea what they are doing. Many times weaning someone from a med that they have been taking is going to be a procedure that will require close attention and a readiness to answer any questions the patient ma have!
Weaning someone off of a med improperly can be very harmful to some people and cause many problems for others. This is why the weaning has to be handled carefully by someone who really knows what they are doing! :agree:

acshuman