doctor Visit

[susiestar]

I just went and saw my regular doctor about the hospital thing and the migraines.

She is not sure it was a seizure. Asked if I would do a drug test. I made sure she had a list of my medications, and said sure.

So we will see what that comes up with.

I told her I thought it was Arava in combination with the other medications. She said Arava wouldn't do that by itself, but nobody really knows in combo with the other medications.

She did say that the hospital should have kept me on the lyrica, and that abruptly stopping it by the 3 day migraine, then the hospital refusing to give it to me COULD have done what they saw, MAYBE.

She did schedule an EEG for Thurs morning.

I don't know if we will EVER know what happened. I actually had to GO to medical records to request the paperwork. NINE calls were NEVER returned. I have caller ID on every phone and had NO unidentified calls. So they didn't even TRY to call. But I went there, filled stuff out, and will see what I see.

My reg doctor had SOME of the records, was appalled that they wouldn't call her during the day (at night they only call the doctor on call, but during the next day when I asked them to call my reg doctor, the nurse flat out REFUSED).

I am confused. But at least I know what will show up in the drug scan, and I do have a new medication to prevent the migraines, and a sample of the new triptan - TREXIMET. It is a blue pill, came in a funky package that is a neat pill box. Will be a fun container to recycle (and relabel, of course).

Anyway, I wanted to keep you all updated. I will let you know what the EEG says. The doctor doubts that they will find seizures.

 

[Hound dog]

If it was a medication reaction I hope they can get it figured out. Would be valuable info for the future. Hope the EEG turns out ok.

Hugs

 

[gcvmom]

Confirming seizures can really be hit or miss. Just because you have a negative EEG doesn't mean you don't have seizures. In husband's case, the fact that his symptoms were recurrent, happened at all different times of day during any number of activities, plus the actual symptoms themselves (and then finally finding a physical cause on an MRI) confirmed seizure activity. He's had two EEG's which were both negative.

Hope this next steps gets you that much closer to feeling better soon!

 

[Stella Johnson]

It is hard to confirm a seizure after the fact. They come and go when they please and it can take multiple EEG's to see one.

I know you must be really scared. I remember what it was like when S was going through all that.

Steph

 

[susiestar]

I am really worried and scared. The doctor seemed to put a lot of value on the EEG ruling seizures in or out.

I am most worried that my liver is not handling the medications correctly. Or my kidneys. Or both. My mom has an inherited liver disease (not from drinking alcohol) and NONE of the docs seem to be paying attention when I ask about that.

I wonder if the drug test shows higher levels of the medications I am taking if that would mean my system is not clearing it out properly??

Anyway, thanks for all the good thoughts!

 

[Big Bad Kitty]

Susie, you are in my prayers.

 

[Lothlorien]

I am really worried and scared. The doctor seemed to put a lot of value on the EEG ruling seizures in or out.

If she's putting a lot of value into that then she's clearly in the clouds. Have you been to a neurologist? EEGs are likely going to be negative unless you have seizure activity during the EEG. Except for the EEG done the day that Missy had a major seizure, every EEG she's had was negative. But even the one that she had on the day of her seizure only showed slight spikes that neuro said didn't prove or disprove anything.

 

[susiestar]

The neuro wants the EEG done before he will agree to see me. Three neuros ALL have said this. I was surprised they don't want a sleep deprived EEG, but they don't.

 

[Shari]

Another vote for don't bank on the EEG.

Tho I do hope you get some answers.

Hugs.

 

[Lothlorien]

Really? I thought the neuro would do it in their office. Then again, I'm always dealing with pedi neuros....in NJ/PA, so maybe it's different for adults.

Have the EEG, but it probably won't show anything and unless you actually have another seizure, neuro will not likely give you any medications for it. Despite that, it's important to get into the neuro, so that if you do have another one, you've already established a relationship with the neuro.

 

[butterflydreams]

I hope you are able to get some answers! No advice on the whole EEG thing, but sending lots of hugs and best wishes.

Christy

 

[susiestar]

The EEG is done at our hospital. Just got a call from insurance and they will NOT cover it - not enough justification because it was ordered by a regular doctor. So I can either pony up $4000 or skip the EEG.

Considering I just got a call from the doctor office about the Vit D shot and the forms I could find are NOT documented to help when the Vit D level is this low, I have to pay for that out of pocket too. Or my bones will start to collapse. The endo thinks that whatever happened -seizure or whatever they are calling it- it largely in relation to the Vit D deficiency changing how my body processes things. Apparently my reg doctor called and spoke with the endocrin doctor and they both think the Vit D is responsible in large part, a medication interaction in a secondary part.

So, I am scraping up $$ to pay for the shot first, the EEG second. I do have good insurance, but apparently I finally found something they won't cover. (First thing in 4 years, and we have had some major medical stuff with each kid, so this is still pretty good, I guess.)

I am postponing the EEG for a few months. When I have the $ I will get it done.

Susie

 

[Lothlorien]

Have the doctor call the ins. co. If that doesn't work, call the neuro and ask them to order it. That's crazy!