I've calmed down

[Rae1889]

I have calmed down since my disappointing neuro appointment, but still feel quite lost.

I have filled out a massive complaint form for each of my doctors I saw since my first seizure. I have also requested copies of my medical records. It takes up to 30 days and each hospital is chargeing me $45 for the records. because they are apparently the property of my doctor (can someone tell me how information about MY body is the property of a doctor who was already paid for my appointment?) and up to 60 days for any testing results (like my chest xray, MRI, CT and EEGs)

Then I have to add the info to the complaint sheet and send them off. Which could take 6 months to get a response.

My seizures have gotten worse. nearly daily TCs, usually multiple, and if I skip the TC its usually multiple SP or CP. Im tired all the time, headaches and feeling sick to my stomach from exhaustion. I have an appointment with my regular doc on April 11 to discuss the neuro appointment. (i dont see the point of this, as the neuro already told me not to make a follow up appointment and to move to minneapolis, so not sure what a regular doc can do, as the neuro discontinued meds, and I dont wanna go back on neurontin anyway)

I can ask for another referal to a different neuro, but I have found that most doctors do not want to challenge the previous docs diagnosis or re-do tests. Im just lost and have a lot of negative thinking happening as I am just so tired of having to fight for care and understanding from medical doctors. Even if these seizures (according to them) were psychogenic in nature, they should be offering help, not leaving me stranded alone with no where to turn.

I did get a letter in the mail from my neuro to say that the ambulance needs to bring me to the health science centre hospital in case of prolonged seizures. Why even bother with this if he told me out right that psychogenic seizures are in no way dangerous.

Just wanted to let you all know Im okay.

 

[Chel]

Rae, I just read your last para, and what your neuro wants, shaking my head. Probably shouldn't say what I think of him.

A couple of people in here have changed neuros and had different outcomes; in my own case, the neuro I saw in the stroke clinic just over a year ago outright asked me my opinion of his colleague I saw 5 or so years earlier. I was fairly blunt, and he smiled and agreed with my assessment. So I wouldn't be too worried that they will agree with your most recent neuro.

I can't do much more than offer a hug, and say:

WELCOME BACK, RAE!

 

[Endless]

Rae,

It is so good to see you back to your old fiesty self. Amazing that we have to fight an illness, and then pile on top of it fighting our way through the medical system. But that's the way it is, unfortunately.

I'm so sorry about all the seizures, and i'm concerned for you. Forgive my lack of memory, but are you on meds of any kind right now? The seiuzres need to end, and meds may be the only path to that.

I did get a letter in the mail from my neuro to say that the ambulance needs to bring me to the health science centre hospital in case of prolonged seizures. Why even bother with this if he told me out right that psychogenic seizures are in no way dangerous.

CYA. Legal butt-covering. But the advice can still benefit you, because that would definitely be the place to go.

 

[Chel]

I did get a letter in the mail from my neuro to say that the ambulance needs to bring me to the health science centre hospital in case of prolonged seizures. Why even bother with this if he told me out right that psychogenic seizures are in no way dangerous.

Hands up, everyone who believes Rae's seizures are psychogenic, and therefore harmless? No-one? Okay, then going in the ambulance to the health science centre at least ensures you receive treatment, and every one of them is recorded, for when you are under the care of a decent neuro.

You can use it for your long-term strategy, as well as your health.

*shrugs*

 

[Nakamova]

Hi Rae, I'm glad you're back, but hugely sorry that things continue to be tough. It may seem like an exercise in futility, but I do think it's worth it to ask your doc for a referral to another neurologist. You're waaaaaaay overdue to find a decent one.

 

[Bernard]

No such thing as status epilepticus for psychogenic seizures? That's news to me. SUDEP is 100% guaranteed to be precluded for folks diagnosed with PNES? Also news to me.

 

[Rae1889]

Bernard, it may just be my just awakened brain, but that post makes so sense to me. Can you dumb it down? Or explain? Or was it all sarcasm

 

[Nakamova]

It's not just you Rae, I'm confused by Bernard's post too...

 

[Superman1988]

Same here

 

[Cint]

Welcome home, Rae,

I'm so sorry to hear of your disappointment, but please don't give up. There are much better doctors out there who will give you the much needed listening ear and respect you deserve. I had to switch doctors with my previous epileptologist because she was being such a smart **S and I got to the point where I couldn't stand her anymore. Now I'm pleased with the one I do see.

You do need to see some dr., even if it is your PC dr. since you say your seizures have gotten worse. If the TC are more frequent, that could be very dangerous and you will need to ride to the hospital in the ambulance. You could go status if you're not on any medication. If that happens, make the dr. pay.

Hang in there, Rae!!

From epilepsy.com

Video-EEG findings

Although the EEG tracing is frequently obscured by movement artifact, small interpretable segments containing alpha activity may be apparent, indicating that consciousness is preserved.

A normal or nonepileptiform EEG during a seizure may suggest a NES, but it can also occur during a simple partial seizure or frontal lobe complex partial seizure undetected by surface leads. A normal EEG during a seizure in which the patient is displaying generalized motor movements would not be expected in a true epileptic seizure, however.

The most important task is to ensure that the recorded event(s) are typical of the patient's spontaneous attacks. This task can be accomplished only by reviewing the recorded attack with a person who has witnessed such events. If it is determined that the recorded and spontaneous attacks are similar, a presumptive diagnosis of NESs can be made.

Some clinicians require that more than one attack be recorded, but this is not always possible. Nonetheless, it appears that a single recorded event similar to previous attacks is sufficient to consider NESs the most likely diagnosis.

This diagnosis, of course, does not exclude the possibility of coexisting epilepsy, especially if the patient has attacks with different clinical features. Some epilepsy patients experience psychogenic nonepileptic seizures at some point, and patients with psychogenic nonepileptic seizures can have neurologic illness.

The interictal EEG is not useful in making the distinction because it may be normal or abnormal in either case. The interictal EEG of patients with NESs may contain epileptiform discharges, even though the ictal record does not reveal electrographic seizure activity.

 

[Bernard]

Last post was in response to your doctor's comments that "psychogenic seizures are in no way dangerous".