Update

[Rae1889]

So I saw my regular doc yesterday at 5:45pm. He doesnt agree with my neuro letting me go. The EEG was considered inconclusive due to movement, fidgeting, me playing with my tongue ring, some leads were off, or improperly placed. So the whole video EEG was considered inconclusive because the EEG didnt catch the seizures they caught on tape. Plus they took it off to soon to tell if the others were non-epileptic or not.

Legally my doc cannot re-prescribe anything as the neuro signed me off meds. He also has to book the psychiatrist appointment (with a regular one, because there isnt one who can help me with seizures in manitoba) and then he asked what I want to do. I cried and said I didnt know.

He said he wanted to create a plan of attack. Start with a diet of sorts, and other alternative methods to cut my seizures back until the psych signs me off as fine, then book a new neuro so that they cannot pass it off as psychogenic if I have already been told I am fine.

Then he has me checking my blood sugar several times a day and after each seizure. So far I have been averaging between 6-8 and after a seizure yesterday I was at 3 (I think. I dont remember) so its considered low.

So thats what is happening now.

 

[Nakamova]

It sucks that you have to jump through hoops to get proper care because of the lousy neurologist, but it sounds like your regular doc is on your side, which is great.

Blood sugar definitely can play a role, so it's not a bad thing to be on top of that. What sort of diet did your doc have in mind? And when is the psych appointment?

I hope you are feeling positive about this. Either way, I send you a big hug.

 

[Chel]

I love that your doc is creating a "plan of attack" - he is SO on your side! He really wants to work with you to get you through this, get you past your psych assessment and into a new neuro. This is great news.

It's hard work, and it shouldn't be, but you have a really good doctor there. He will help you enormously.

{{{hugs}}}

 

[elizzza811]

That's what I worry will happen with me if I agree to a video EEG...nothing will show up, and then they'll be labeled as 'psychogenic'. Add to that the fact that mine only occur once every month or so (occasionally twice), and I'm doomed.

And I don't have a doctor on my side. You'd think I would since I crashed my car and dropped phones mid-conversation...

 

[huskymom]

I hope that everything works out soon for you. Nothing like adding some extra pressure and stress to someone! I will keep you in my thoughts. Thanks for the update

 

[Cint]

{{{HUGS}}} to you Rae,

It sounds like the dr. is on the right track now and that is great. And having you seek a new neurologist is even better. Keep a close eye on your glucose levels, that plays a big role in our daily lives.

 

[Loopy Lou]

That's good news that the doc is on your side It may take a while but hopefully you'll build up the evidence and stuff to show that it's not psychogenic.

 

[KARDSHARQUE]

If your reg. dr. feels knows you still have seizure issues then he/she should get in contact with your neurologist and let that person know. Even if you showed no signs of any for five years the neurologist should still see you. Just not as often. Ask your dr. to recomend someone else if you feel the need.

 

[Rae1889]

Read over my medical chart today that I got from the ICU.

It states right in there that the EEGs all showed something. Right Hemisphere slowed to sleep mode. Left hemisphere sudden burst of spikes in temporal lobe. K complexes while sleeping with deep Vs and a full diagnosis of Basal Frontal Lobe epilepsy and Bitemporal lobe seizures. Plus possible pseudo-seizures.

I love how the eeg clearly says one thing and they focus on the possible, non helpful seizures.

blood sugar spike to 20.2 mmoL today because I ate nothing but sugar and juice and pizza and potatoe skins. Plus like 3 bananas at breakfast. Then dipped to 3 again earlier

 

[epileric]

Be careful. A friend of mine who was an RN told me that hypoglycemia is common in epileptics because of how someones blood sugar tends to drop after a seizure.

Of course hypoglycemia makes one vulnerable to diabetes.

 

[Rae1889]

Lovely. everything ust has to add up with us font it?

 

[Meetz1064]

Rae, take that ICU file to your regular doctor and show it to them (after you make copies) and show them where it says all that about the seizures. Perhaps you have legal grounds to go after that neurologist. I'm not normally one to do such a thing, but I'm thinking your neuro would certainly deserve such a thing. That's ridiculous.

And PLEASE be careful with your blood sugar. You DON'T want to add diabetes to the mix.

(((((((((((((HUGS)))))))))))))

 

[Cint]

And PLEASE be careful with your blood sugar. You DON'T want to add diabetes to the mix.

I agree! I also have Type 1 diabetes along with seizures and it is not fun. I have to be extremely careful with what I eat and checking my blood sugars 3-5 times a day, sometimes during the night, also. I watch and monitor my carb intake, which is what people with diabetes should do. When my glucose falls, orange juice is one of the things the nurse originally told me to drink to bring it back to the normal range. I don't know what my glucose level is when I've had a seizure.

 

[Rae1889]

So I'm still waiting for a call from my GP office to come in and discuss the letter my psychiatrist was supposed to write telling him that I dont need to see a psychiatrist. I have left several messages but nobody returns my calls. Not sure what to do anymore.

 

[Loopy Lou]

Wow that sounds remarkably similar to the NHS system over here. I recall it taking over 3 months just to get the results of my MRI, and the average time to send a letter is about a month.

I think all you can do is keep calling. Eventually someone will have to pick up. Sounds like neglect of your health to me.

 

[Rae1889]

no, the system isnt meant for somebody to pick up. Its strictly a "press 1 for dr A voicemail, press 2 for Dr. B voicemail and someone will call you back"

 

[Loopy Lou]

Ahh... maybe when they have 92 messages left from you they might get the idea?

 

[Rae1889]

ha ha! Im going in soon to see if they can yank my tonsils again. Strep throat and tonsilitis for over 6 years. The last 3 its been at least once a month. May get them to redo the tubes in my ears and remove my adnoids at the same time.

 

[j.j.]

I had a video eeg whilst in hospital and the eeg dept said not epilepsy because nothing on it.I have frontal lobe and temporal, when my consultant saw the report he wasn't happy that they diagnosed purely on eeg.He had all other things like discriptions of my sz from other people aswell as my own.My sz are typical frontal lobe and they aren't always picked up on eegs.He looked at my veeg and confirmed my diagnosis.My consultant specializes in epilepsy and has for many yrs,the eeg is only a tool to help not an absolute for diagnosis. Hope this gives you some hope. Janet

 

[Rae1889]

Hi Janet,
I already know all that, its trying to tell the medical community that which is proving hard. They all seem to think that because they got their PHD that they know everything and I cant tell them they are wrong. They seem to think I want to be told I have epilepsy. And to be honest, at this point I just want someone to tell me anything and make it go away. I dont care if its Epilepsy, or Psychogenic *although I dont believe those exist) I just want someone to help me make the seizures stop, or at least get them to only a few times a year.