working with no diagnosis/seizures

[Sunnytoday]

What do you have to tell your employer?? I hope to apply for part time work this week, think of me. :) My AFO's are wonderful, I am walking around so much better (a bit tin-mannish still) but walking non-the-less. my balance is a bit worse in them though. :()

I do have an added concern, as I had two more short seizures this past week. Both were in the evening, when I was very tired, and then lasted for only about 45 seconds to a minute according to my mom and my aunt. I These are not counting all the many jerky things I get several times a day were my arms convulves and my head snaps back very hard (this is only 2 or 3 seconds long). I'm ok, it just looks odd and I can't talk or my voice suddenly comes out loud when my head snaps back.

I am also having trouble with simple things. For example: counting, I cannot count from 1 to 100 much less count items, 1,2,3,4... I get up to 39 for example, and then go back to 30.

I do WANT so much  to be normal. :) Sometimes it's just so hard when my mind won't co-operate.

The neurologist in NY said it would be fine if I worked part time, so I will try. Of course, they also couldn't diagose me because they couldn't figure out what it was. :)

I hope you  all had a wonderful Thanksgiving.
~Sunnytoday~

[jensequitur]

If you have to show your parents that you can't work a temp job in your current condition, then you really have no choice!  And your hair does look cute!  You can wear your hair in a pixie cut - you've got the face for it.  When I wear my hair short, it looks like somebody's shrunk my head.

[Fluffysmom]

Hi there!

Great hair cut!

I'm just catching up on things after being gone most of a week, and am really too tired to post intelligently, but I wanted to say hello, and that it's good to see you again.

Kathy

[Sunnytoday]

hi guys....
First off, Quix, I totally understand where you are coming from. Personally, I would've gone this direction a bit sooner, but a) it's taking a long time to get appt.'s anywhere and b) my parent's want me to try to work

When we go to Vanderbilt, I've committed that any testing they want done, including that hosp. seizure unit, I'm all for, especially if they can set it up at the AL UAB hosp. seizure unit (they have a good one and it's closer to home). I head to Vanderbilt on the 29th of December.

I'm only goin to pick up a temp. job, just to see if I can even do this. If not, I will not stay there long. :)

THanks for the concern and the tough love. I do hope to find answers and testing somewhere soon to stop this.... but until then.....
~Sunnytoday~

[sllowe]

Honey Bunny -

Want to make sure you see this sweety.  Remember, you are strong, and you CAN do this! There is nothing to lose with the testing. And, afterall, we'll all be right there with you in spirit and mind, promise!!!

Love and hugs,
Shell

[monotreme]

Sunny, didn't you mention a seizure unit a few weeks or a month ago?  I think they were making you decide quickly whether or not to admit yourself?  Do I have that right?  Is there any way that you can get a neurologist to admit you to one.??

Did NYU recommend a seizure unit ever?  I agree 100 percent with Quix.  Please somehow get into a seizure unit.  I would also fax the NYU genetics doctor the lab results Quix mentioned and then follow up with a phone call.

I am worried about you.
Elaine

[Quixotic1]

I need to be the discouraging voice here.  If you are having trouble counting simple things, counting to 100, keeping track of a conversation, doing simple addition and multiplication, then I do not see how you will how a simple job.  Something like a receptionist requires multitasking and keeping track of many conversations at once.  Is this truly feasible?

At this point it appears to me that you need to be in a seizure unit to determine if these are epileptic (electrical) events or not.  Any type of seizure, including absence seizures can escalate to a full blown gand mal and there is danger of falling, aspirating, head injury and (rarely) death.  It has been quite a long time since NYU and your problems are not settling down.

I recommend that you bite the bullet and do the seizure unit.  Yes, it may be a week there.  I was in one for four days.  They are run by neurologists who can also evaluate you for myoclonic jerks or dystonic movements.  You can deny that the "seizure-like" episodes you are having are seriously affecting your life.  I realize you just want to be normal, but that doesn't erase the fact that what you are going through is not normal and we don't know how serious it is.  

I also recommend Neuropsychological testing, like Terry just had.  That may help pinpoint the kind of deterioration you are experiencing.

Finally, Kiddo, you need to see an academic geneticist to interpret the amino and organic acids testing (and other) that you had.  The answers still may lie in there.  In all reality the ordering doctor ethically should do the evaluation.  Have you contacted the geneticist that Drs K and H sent you to?  You could send the results to him/her and see what they say.  Otherwise, make an appointment at the nearest university medical center.  Genetics is usually in the pediatrics department.  With the testing that you have had it would likely be a single visit.  You could likely get the genetics consult while you were in the unit if you were at a large medical center.

I just don't think there is any way that you can or should avoid doing the seizure unit.  If the 24 hour EEG didn't show anything, but you are still having the episodes that sound like seizures, you must pursue it.  Also, it sounds like more than one neuro that you have seen feel that this is the next important step.  I am at the point where I agree with them wholeheartedly.

What is to be gained from avoiding this?

A little tough love here, but it sounded like you needed a reality check.  And, yes, when everything has always come easily to you it is had to feel like you are losing IQ points on a regular basis.  I left medical practice permanently one morning after my brain couldn't wrap itself around a premie's respiratory distress - something I had handled with ease all of my career.

Please consider all this.  

with hugs,

Quix

[Sunnytoday]

Wonko... Yes, I'm just out of school, and before this whole thing started this year, I was "normal" if you call it that. :) I graduated highschool in three years, volunteered over 200 hours, and then worked a full 6 months, and then put in 15 to 17 credit hour semesters all through the year (including the summer) to finish my A.S. degree in two years flat. I was blessed, I landed a scholarship becuase of a high ACT score so that was why I had quit work when I went through school.... I suppose (have you ever noticed this?) that it's harder to handle it when you have cog. problems when you are used to things being so easy? Example: I aced everything in school till the day I had my first "attack" ... I was offered a tutoring position in math at the college while I was still there in class doing algebra... and today I can't count to 100 or add or mutiply. talk about obvious problems. Mom and I are doing math drills and flash cards to help me work on it, and re-memorize all my times tables and how to add, etc. That's just as hard as learning how to walk again!! :)

I'm applying for part time jobs through a temporary agency, and going for a medical office job, anything like a receptionist, or perhaps if I'm lucky something to do with my degree in medical records. I do know I can only work part time, and going through a temp. agency will give me the freedom to decide if I can or cannot handle the job.

Have a wonderful day!!
~Sunnytoday~

[wonko]

Welcome back!

Can you remind us of your work history?  I know you are a young'n and just got some spiffy career qualifications, but I don't recall if you used to work, or if you are more just out of school and training.

I'm not going to try and comment on what you should/could do from a legal point of view, I just don't know.

I do think you should consider the option to work from many perspectives, both practical and emotional.  If you have both cognitive and physical problems, be honest with yourself in assessing what you think you can do.  I know that is not easy.

Do you know how much/long you can work?  If you have a busy day, do you need to rest the next day?  Assessing your stamina may also help you decide what type of work you can do.

I appreciate how important work can be, even when you are not well.  For me it is not only a finacial need, but also a big part of who I am.  But I also appreciate how I need more time to take care of myself.  Just because you don't have a dx doesn't mean your body is ready to start a demanding job right now.  If you can afford alternatives such as shorter/flexible shifts or volunteer work, those might be good avenues to consider.

Good luck and let us know how it goes...

[jensequitur]

Hey, Sunny - my dystonia, if that's what it is, is mostly when I'm feeling symptomatic.  There were three days in a row when I was having about one every ten minutes.  That got old in a hurry.  Now it only happens when I've overdone it and fatigued myself.

I think it's connected to my back, because my legs would get really weak and buzzy when I had these incidents.  Sometimes I would try to get up, and end up falling back on the couch.  

Now, granted, being in a seizure unit sounds like no fun at all.  But if it helps you get closer to a diagnosis, I'd say go for it.  Your first step is to find a neurologist that will work with you and your desire not to be a lab rat!  Once you find him/her, then you can move on with your life.

[Sunnytoday]

Hi Shell and Doni.. thanks for the encouragment, I applied at a temp. agency today, we'll have to see what comes. As far as my GP helping, he just says- find a neurologist! And every neuro I've been to wants to admit me to a seizure unit indefinetly- which is also scary since I do not know how often I've been having seizures, maybe 1 once a week? And of course, I don't have a permanent neurologist, I've just bopped here and there. I hope that Vanderbilt will work, but who knows that could not be the "one" for me yet. :) I was asking mom this afternoon and she thinks i may be having more than one type of seizure, and mentioned that she thinks I may also be having abscnese seizures. I didn't know that, she just said that she's noticed it sometimes when I'm very tired I'll mentally "disapear" for a few seconds or my speech will stop or become garbled and completely non-intelligent for a 30 seconds or so and then she'll ask me "are you ok' and then I'm like what? what was I saying? And then I'll completely change subjects as if I foget what was happening. So, I suppose that this could be happening as well.

Jenn- what you are saying about the jerking things being dystonia sounds ok. I only get them when I am tired though. Does that sound right about dystonia?

Airyona- thanks for the note, I do hope this goes well, and I hope that you are able to keep your job as well. I hope to work a part time job to just feel needed somewhere and make some income and help the family out. I'm sure you understand!!

~Sunnytoday~

[airyona]

Hi, legally yoou are not obligated to tell your employer anything unless you need special accomidations for the job you are applying for. Then you will have to have your Dr fill out disability forms for you.

My husband had seizures from the age of 16 to about 27, he was on medication for them. They never found a reason. He is 40 now and knock on wood, has been okay.


Best of luck with finding a new job, I've been at my job for almost a year and have had to reduce my hours and fight to keep my job. I can't imagine having to apply somewhere new right now. I think you are very brave and I admire your courage. I also share your feeling of needing to fell normal.


Wishing you the best,
Airyona

[jensequitur]

Sunny, I've done some research on the weird arching back thing I've been having, and what I've come up with is dystonia.  It's an involuntary jerking of the neck, torso, and sometimes the arms.  It can be caused by lesions in the basal ganglia.  I don't think I have lesions in my basal ganglia, but I've had lots of the seizures/spasm thingies, and I'm beginning to believe they're not seizures, just involuntary movements.  Sometimes people are born with it, or acquire it through brain damage.  Paroxysmal dystonia and multiple sclerosis are linked frequently.

I believe there's also a form of dystonia that causes your voice to change, or it becomes difficult to speak.  

I think it would be good idea if you applied for disability.  This is to ensure that your employer makes proper accomodations for you.  It's going to be difficult to pretend to be normal, especially with the involuntary motions and the walking problems.  If you could find work from home, that would be ideal - then you could choose your hours, and if you felt tired, you could go take a nap.

What did the docs at NY say about your seizures?  I seem to remember that they shrugged their shoulders and bumped you out the door.

[doni54]

Hi Sweet Sunny,

I'm praying that someone can get that dx for you, and do it sometime in the near future.  I know this is really frustrating for you, but you have the right attitude!!

Good luck with the job hunting, you know we're all pulling for you.

I don't know what to tell you about the siezures, that has to be a scary thing.  Can your local GP help you in any way?  There has to be someway that someone can find the cause of this, it just doesn't make any sense to me.

Well, I don't guess any of us here could be considered "normal", but we are all in good company, huh?  Abnormal or not, this bunch is the greatest!

Hugs,
doni

[sllowe]

Hi Honey,

Well, if this is something you feel you would like to do, I think you should try. You know we are in a world where anything is possible. What is the definition of normal? ha/ha...

YOu are a wonderful girl Sweet Sunny Bunny.  Please remind me what they said in NY about the seizures.  If you don't want to rehash, I'd understand - just point me to the thread if you are able.

I had a nice Thanksgiving honey - welcome back!
Big, Big, Strong Hugs!
-Shell