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Brittany Leigh
06-11-2009, 09:03 AM
so yet again, jus got home from another hospital stay.
5 nights ago i had a pretty harsh seizure out of the blue (with no previous history of seizures) and was rushed by ambulance to the hospital where i stayed up until yesterday afternoon. after being poked and prodded with bloodwork and a painful spinal tap, i was first told i somehow had aseptic meningitis and then the following day after an EEG was told i have epilepsy.

is it ever gonna end?
:mad:

...its starting to seem impossible at this point to be positive...

jola57
06-11-2009, 01:17 PM
Brittany, hang in there, we've all had days, weeks, or months :eek: like that. Wishing you all the best.:) Sometimes when it just feels like there is no end in sight, it's ok to feel down and out, but just do not let it hang around too long

Jack
06-11-2009, 04:14 PM
Brittany,
I've never heard of it before and the doctors may deny it, but there could be a link with your Wegener's.
I know what it is like to be hit with one thing after another and I'm sure that it can't all be put down to coincidence. However, most of my conditions from the past were either brought under control or just went away of their own accord. Hang in there and see where it leads. It may be just a blip! :)

Sangye
06-12-2009, 12:35 AM
Brittany, I'm sorry you had to go through this. How painful, frustrating and terrifying it must be.

I assume they did a brain MRI or CT also??? Wegs can affect the brain and it's absolutely necessary for them to track this down. It's too easy to just say you suddenly developed epilepsy and leave it at that.

I don't remember which docs you're going to-- Wegs specialists? Also, remember that while we assume the ER or hospital docs will communicate everything to our regular docs, that doesn't happen. You must make sure to call your Wegs doc and get in ASAP to discuss this.

You need a thorough neuro workup-- not just the routine stuff they do in an ER. Don't accept the diagnosis of epilepsy silently-- there's way too much at stake. Get several neuro opinions and make sure every one of them knows about Wegs in the Central Nervous System. This would be worth a trip to a major Wegs center if you're not near one already.

(As an aside, have you fallen recently? Especially on your butt? Sat down hard or sat for too long on a hard bench or seat? There are certain misalignments in the spine that are linked to seizures. I can explain another time if this applies to you.)

I've had horrible things like this happen, too, and I know how defeating it is. Try to redirect your energy right now into getting proper care. That will help you dig out of the sorrow. It's true about the blips, as Jack said. (He would know!) Hang in there. :)

Sangye
06-12-2009, 12:43 AM
Brittany, do you have someone helping you advocate for yourself with your docs and the system? How's it going with disability, medicaid, etc....?

Jack
06-12-2009, 01:00 AM
Sangye put it so much better than I did. :rolleyes:

There is a great tendency for doctors to treat each symptom as an isolated disease and not put them all together under the Wegener's banner. Most do not seem to appreciate that this is a systemic illness that affects each patient in a unique way. There is far more to it than the well known respiratory and renal involvement and I'm afraid that it is going to be your job to educate your medical professionals.

Doug
06-13-2009, 11:01 AM
To add to the dialogue, doctors tend to think in terms of their specialties. If any on your team don't think of what happens to you through the filter of Wegener's granulomatosis, kick them in the butt and send them home. Otherwise, they will miss significant connections (as others note above) where epilepsy could be related to the progress of WG through your system. It's too important to your health and safety for them to overlook these possibilities. There may be no connection whatsoever, but they need to start with the possibilities of how WG might bring conditions about, eliminate it through a rigorous application of training and knowledge, before they go on to more obvious causes. That's how my doctors have approached my WG, and I've flourished in consequence, for the most part.

Doug
06-13-2009, 11:03 AM
Sangye put it so much better than I did. :rolleyes:

There is a great tendency for doctors to treat each symptom as an isolated disease and not put them all together under the Wegener's banner. Most do not seem to appreciate that this is a systemic illness that affects each patient in a unique way. There is far more to it than the well known respiratory and renal involvement and I'm afraid that it is going to be your job to educate your medical professionals.

Yes, and we pay a heavy tuition for their training!

Sangye
06-13-2009, 11:32 AM
Brittany, even if it isn't Wegs causing the seizures, it's still extremely important to find the cause and not just go on anti-seizure meds just to see if they help, which is often done. Those drugs are very risky, have a lot of side effects and are very hard to balance. (While many of them are also used to treat bipolar disorder, the dosages for seizures tend to be much higher) Also, if you have a history of seizures, you will lose your drivers license until you are seizure-free for quite a long period.

I'm saying this not to upset or scare you, but because I don't want you to go down that road without very good reason. It's a major highway.