I *hate* my Neurologist!!

[Ponygirl]

I haven't been feeling great for some, time, now. But, it was manageable.
Last couple of days, *death*, would be, *welcomed*!!! I'm soooo aggravated because, I have
Spina Bifida, which, *can*, cause seizures. I'm thinking, this is my shunt, because a while, back,
I was told, my shunt moved "a little", *but*, they *weren't* concerned! Past few days/ week, I've been
having *serious* vision issues! I mean, I've *never* had those!! Also, my speech has been *seriously*
affected!! I've been stumbling all over my words and haven't been able to put two words together!
I know, so much, of this, is Spina Bifida, but, there doesn't seem to be anywhere to go for that,
anymore??? :( Even, here, at B./T.??????:(

Phyllis
have to squint! Also, I'm falling all over my words! I can't put 2 words together! I know, this is seizure
and Spina-Bifida, related, but, the Spina Bifida forum's been dead for, *years*!!
Forgot to add, with Spina Bifida, come, lots of UTI's, which, I know, can, cause seizures because, a UTI
is how I learned that I have a spot on my brain that causes, seizures, to begin, with!

Phyllis

[joy]

we had a neighbor for a short while that had what you hae nd believe it or not a brother who was worse off than her. Out of 3 kids only one was normal so to speak without any health issues. Just today hubby got his pledge card and I asked if he was going to pay it for special olympics.

He replied yes because he always thought of "short britches" the neibhbor kid that played with our daughter as long as she lived here in out neighborhood. Mind you that was a term of indearment.

It is alright to hate your neurologist phyllis. I too have regrest for my first and only one that had me on so many seiaure medicines for my idiopatrhic pn that I too felt lke you do. I hope things get better for you.

[Porkette]

Hi Phyllis,
I'm sorry things aren't the best for you now but don't give up. If your eyesight is being effected it could be the sz. med you are taking as well as the shunt. As I've mentioned to you before you should see an Epileptologist. If your speech is bothering
you that tells me that something is going on with the left side of your brain because that's were a persons speech is but once in awhile it can be split down both sides of a persons brain like it was with me (I'm wierd). Have your family Dr. refer you to an
Epileptologist or if you find one on your own just call that Dr. and see if they will take you without a Dr. refering you and then have all your medical records transfered over to the new Dr. before you see them. I wish you only the best of luck and May God
Bless You!
Sue

[Ponygirl]

I got up late, today, so, I only took my meds., once and feel fine!!

At the beginning of this whole nightmare, I told her, I wasn't understanding *any* of her
directions, so, I was taking my meds. *every*, which, way! I did that for quite, a while!
That, probably has something to do, with why, I feel so crappy, *now*?!?
I can't believe, she hasn't had my blood checked!!

Phyllis

[joy]

i hope you do feel better phyllis. i also am having trouble getting my blood checked - blood thinner-as it is difficult getting out of the house. not sure if it is worth it to get it checked for the damage it would do on feet. arrgh

[Ponygirl]

I really need to get mine checked, Joy! She's made sooo many changes and I've made sooo
many screw ups with my meds., lately, I *know*, I need my blood levels checked, before, I run into
major issues!!

Phyllis

[Buttons2]

Phyllis,are you putting all your meds into a plastic container with the days & AM/PM marked on it? it's easy to use & very cheap. might need more than one container.

anyone can mess up meds so don't be hard on yourself,just try to find a solution.

as for blood tests? costs are being trimmed for everything & blood tests are not cheap. your doc might not be able to request more tests right now.

in my own limited experience: I only see my doc once a year. and only to get refills. and THAT gets messed up every single time! so I feel for you Phyllis I really do.

maybe you should ask your caseworker for an advocate to go with you for doc appointments? someone to write down everything & go over it with you to make sure you understand?

also,I write down the TIME I've taken my meds now that I've had to double one. need a 12 hr gap in times I take & that's not always easy but it is easy to forget-so keep a pen & notebook handy is my advice on that issue.

plus your pharmasist (sp) should be the one to help with your meds/schedules,etc. that's part of their job afterall.

good luck!

[UTC12]

I haven't been around this forum for a long time, due to school, but I just saw your post and I was wondering, have you had your shunt checked. Perhaps a CT or x-ray done. If your shunt is not working, it will effect your vision due to the pressure building in your brain.

[Ponygirl]

Thank you for your reply, UTC12!:) Yes, my shunt's been checked and that's definitely, not it.
I have Spina Bifida and siezures are just part of that, sometimes.

Phyllis