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Help diagnose me? (Read 4793 times)
Courtney04
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Help diagnose me?
Oct 23rd, 2006 at 2:42am
 
A few years ago, when I would wake up (sometimes right away..somtimes half hour after), my body would jolt.  Very briefly, maybe three times a minute then stop after I've been up for a while.  Like my arms fly out.  I'd shake like I had the chills and only for a second.  But if would feel differently inside.  Felt bad..like my eyes would roll in the back of my head.  Almost, too, I wouldn't remember that brief second that I would shake.  I started passing out.  I would just wake up in my bed..when I was supposed to be getting ready for school..and going to school... and not really sure what happened.  Then I found out I wasn't just passing out, I was having seizures too.  I'm not alert when I have them.  So it seems I have these symptoms ONLY when I need more sleep.  If I wake up on my own, naturally and have had 8 hours..I wont have any problem.  But if I have 5 hours of sleep and am woken up via alarm..then I will shake, etc.  Anyone have any ideas?  I have had scans of my brains..everything seems normal.  I have been on Zonegran to control all of this.  But I haven't been told why this happens to me or what I have.  Again, any ideas?

Courtney
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Kath41
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Kansas City, USA, usa, 297, 159, MO, Missouri
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Re: Help diagnose me?
Reply #1 - Oct 23rd, 2006 at 5:19pm
 
Courtney,
I am sorry to hear you are having problems  Smiley.  I did not personally have any of the symptoms that you are describing when I was diagnosed with Moya Moya but it does sound somewhat similar to what my sister has been experiencing....the neurologist has done an angiogram to rule out MM, that came back ok..then he did a MRI of her head and neck, that too looks ok...we are doing some testing on her adreneline glands now because she has been on her blood pressure medicine for five years now and her face still flushes etc.  She has times where her arm just loses control and flings about... she was complaining of tingling, like a small electric shock happening at times...Just some things you mentioned sounded like her....We don't have a diagnose yet but I will let you know what we find out, maybe it could be helpful on different avenues that your doctor could look at??
Good Luck and keep searching for answers for your ailments, hopefully you will be able to get a correct diagnose  Smiley
Your Friend,
Kathleen
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kotipup
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My daughter, Daphne, has
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Landenberg, USA, PA, Pennsylvania
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Re: Help diagnose me?
Reply #2 - Oct 23rd, 2006 at 6:07pm
 
Courtney,

Do you know what kind of scans you've had?  A regular MRI or CT Scan will not necessarily pick up moyamoya disease.  To diagnose moyamoya, you would need an angiogram or an MR Angiogram (MRA), which is much like an MRI, but contrast die is added to look at the blood vessells within the brain -- an MRI only looks at the structure of the brain, and does not include much detail of the vasculature.

There are many different causes for seizures.   Some people never know why they happen (and some people simply grow out of them), but I think doctors should exhaust every reasonable means of finding out their cause. I hope you get some answers.   

Good luck!

Jenny
(mom to Daphne.  www.daphnestory.com)
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Courtney04
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Re: Help diagnose me?
Reply #3 - Oct 23rd, 2006 at 10:44pm
 
Hey, thanks for your replies. Smiley  I have had an MRI, blood tests, an EEG and a sleep study.  All normal!  Kathleen, I don't have tingling like your sister...does she have spasms in the morning like me?  My seizures are directly related to my sleep and when I wake up/lay down..something along those lines.  Jenny, I'm happy Daphne is doing better...she's a cutie.  I watched you and your family on Mystery Diagnosis and that's why I am here.

Courtney
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Islandentity
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Re: Help diagnose me?
Reply #4 - Oct 24th, 2006 at 1:57am
 
Courtney,
     Before i was dx with low blood sugar I had the same problems with sleep as you, Since then I control it with diet and am fine, The arm twitches I experience quite often with keippel feil........sorry not much help but Koti and Kath covered everything else pretty well

Mike
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Courtney04
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Re: Help diagnose me?
Reply #5 - Oct 24th, 2006 at 4:45am
 
Mike,

You had seizures after sleeping?

Courtney
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Islandentity
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My son Robert has MM

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Drummond Island, USA, usa, 387, 60, MI, Michigan
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Re: Help diagnose me?
Reply #6 - Oct 24th, 2006 at 12:50pm
 
Coutney , no not seizures, however if my blood sugar is to low I will go into almost like a coma type sleep til it has adjusted, I also am extremely shakey in the morning until I eat a breakfast high in protein.

Mike
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kotipup
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My daughter, Daphne, has
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Landenberg, USA, PA, Pennsylvania
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Re: Help diagnose me?
Reply #7 - Oct 25th, 2006 at 5:41pm
 
Courtney,

I think seizures occuring around sleep-cycles is pretty common (in people who are predisposed to seizures).   I have been told that the brain requires less oxygen during sleep, and so the body's adjustment to the different O2 requirements can trigger a seizure.   I'm not sure if everyone would agree with that, but it sort of  makes sense to me.    Daphne's seizures would often occur just when she was waking up, or when she started to get very tired.

I don't think the seizures would necessarily point to moyamoya disease... there could be many different reasons for them... but it wouldn't hurt to request that your next scan be an MRA study, instead of an MRI (you get the same images as with an MRI, but also with details of the blood vessels).

If things get any worse, though... if the seizures are becoming worse, if you start getting any other symptoms, I wouldn't waste any time in getting to an ER and insisting on more studies to get to the bottom of things.

Also make sure you are eating right, and getting plenty of rest Wink   I'm not really one to talk, but we notice that when Daphne's body is stressed, she has more of a tendency toward seizures.  Giving her a healthy diet, and vitamins does seem to make a difference Smiley

Jenny
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