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Mastjoli
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26 May 2009, 10:53 am

My 14 year old daughter has been off school for 4 weeks with an undiagnosed problem. She keeps going into a state of semi-conciousness, usually on standing but sometimes while sitting or while walking. It is totally debilitating. She gets strong twitching movements and her limbs ( usually left hand side ) go dead, and purple. All tests ( including MRI of head and spine ) are clear. I am sure they think she is faking it, but I know her, and she isn't.

Thing is, while trying to look for clues on the web, I came across AS. I am convinced that she has it. She is very bright and when she gets into someting it's like she is driven by some alter-ego to know and do everything about it. She is great at schoolwork but has little interest in it - but could tell you anything about ( say ) dogs that you could ever want to know. Her social life, on the other hand, is practically non-existant. She has a couple of good friends ( because of specific music likes / culture etc ), but is very quiet and doesn't seem to do "social". We have never worried about her - up to now and this physical problem.

Her mom and I have never considered her anything but a wonderful person, she has a great sense of humour and is the kindest person you could meet. She is totally un-judgmental, to a degree that we find astounding.

I am also convinced that I have AS, but I am older now and been through the wringer and learned to hold everything together, in a fashion. I am sure that my daughter will too, but this physical stuff is something else. If anyone has ever come across anything like this, I would love to hear. Sincere thanks to anyone who has read this.



the_phoenix
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26 May 2009, 11:35 am

Dear Mastjoli,

When has your daughter last had her eyes checked? Last time mine were, the eye doctor informed me that the placement of my optic nerves was unusual and indicated that I might expect to suffer from the same kind of physical symptoms that your daughter is exhibiting. The eye doctor hinted that if I did in fact have these kind of symptoms and/or really bad headaches, that I should go in for an MRI. I am relatively symptom-free apart from occasional headaches, so I have not followed up.

Praying for your daughter ... may God heal her.

~~ the phoenix



Danielismyname
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26 May 2009, 11:45 am

An EEG during the episode would probably be wise; it could be seizures (however, the purple arms sounds like oxygen deprivation; I'm assuming she feels very faint or not "there" after the episodes. Do her lips also go purple?). It could be hypoxia caused by some underlying condition, which in turn brings on seizure activity. Plus it's often unilateral.... She could be breath holding due to anxiety (secondary to AS), which could bring on a seizure. fMRI won't pick seizures up.

Seizures of an adolescent onset are more in line with Autism rather than Asperger's. Whilst she may have AS, it sounds like something different entirely in regards to the first paragraph.

I'm not a doctor, of course, but what you describe in the first paragraph is something I haven't seen in text on AS, except perhaps secondary seizures (but as I said, it's more often seen in Autism), or catatonia.



Coadunate
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26 May 2009, 12:17 pm

The only physical symptom I ever had was on rare occasions losing my balance usually while bending down if I was daydreaming at the time.



0_equals_true
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26 May 2009, 12:21 pm

catatonia?



Buddy
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26 May 2009, 2:11 pm

:lol: I hope you get to the bottom of it, I pray for you and your daughter.



TobyZ
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26 May 2009, 4:38 pm

Mastjoli wrote:
My 14 year old daughter has been off school for 4 weeks with an undiagnosed problem. She keeps going into a state of semi-conciousness, usually on standing but sometimes while sitting or while walking. It is totally debilitating. She gets strong twitching movements and her limbs ( usually left hand side ) go dead, and purple. All tests ( including MRI of head and spine ) are clear. I am sure they think she is faking it, but I know her, and she isn't.


Is this all day or comes on like spells? have you looked into the gluten-free diets? there is another thread here.



2ukenkerl
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26 May 2009, 5:29 pm

The way I see it:

Mastjoli wrote:
My 14 year old daughter has been off school for 4 weeks with an undiagnosed problem. She keeps going into a state of semi-conciousness, usually on standing but sometimes while sitting or while walking.


An ASD "symptom" COULD be described that way.

Mastjoli wrote:
It is totally debilitating.


NOT ASD!

Mastjoli wrote:
She gets strong twitching movements and her limbs ( usually left hand side ) go dead, and purple


I COULD say myoclonic jerk or seizure, but they would NOT make the limb PURPLE! It is starting to sound like a cardiopulminary problem.

Mastjoli wrote:
. All tests ( including MRI of head and spine ) are clear


The chances of an MRI finding such a problem, or of it being visible in the head or spine is about ZERO!

Mastjoli wrote:
. I am sure they think she is faking it, but I know her, and she isn't.


HOW do you fake purple limbs?

Mastjoli wrote:
Thing is, while trying to look for clues on the web, I came across AS.


WOW, WHO made such a connection?

Mastjoli wrote:
I am convinced that she has it.


Possible, but the above doesn't do it!

Mastjoli wrote:
She is very bright and when she gets into someting it's like she is driven by some alter-ego to know and do everything about it. She is great at schoolwork but has little interest in it - but could tell you anything about ( say ) dogs that you could ever want to know. Her social life, on the other hand, is practically non-existant. She has a couple of good friends ( because of specific music likes / culture etc ), but is very quiet and doesn't seem to do "social". We have never worried about her - up to now and this physical problem.


OK, now THAT sounds like it could be AS!

Mastjoli wrote:
Her mom and I have never considered her anything but a wonderful person, she has a great sense of humour and is the kindest person you could meet. She is totally un-judgmental, to a degree that we find astounding.

I am also convinced that I have AS, but I am older now and been through the wringer and learned to hold everything together, in a fashion. I am sure that my daughter will too, but this physical stuff is something else. If anyone has ever come across anything like this, I would love to hear. Sincere thanks to anyone who has read this.


POSSIBLE!

MY advice(I am NOT a doctor)?

1. Oxygenation test! It is almost EXACTLY like taking your temperature, and about as quick. It tests oxygenation of the blood, and is NON invasive and PAINLESS!

They can simply clip a device on one of her fingers while they take her blood pressure.

2. Echo cardiogram(like an ultrasound for a pregnancy). It can test blood pressure, basic blood flow, valves, and check the heart , and is NON invasive and PAINLESS!

3. EKG(I'm sure you have seen that) It tests stability of the heart from an electric level , and is NON invasive and PAINLESS!
4. Maybe a stress test(all of the above with her being put under stress, like a treadmill) It tests the above under less than optimal curculstances , and is NON invasive and can be PAINLESS!

ALL of them TOGETHER take less preparation and cost than an MRI. Also, an MRI is more risky and more disconcerting. Why your doctors would do an MRI first is BEYOND me. BTW a heart or lung problem could cause ALL of the symptoms you mentioned!

At WORST, you will exclude a LOT of possibilities and exclude some fuuture problems. At best, you could find out her problem in a few MINUTES! Purplee limbs are a BAD sign, so you should try to exclude things FAST! Of course, I am assuming you mean purple WITHOUT bruises. Bruises could be other things.



Learning2Survive
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26 May 2009, 6:03 pm

She might have

SEIZURES
CONVERSION DISORDER http://en.wikipedia.org/wiki/Conversion_disorder
HEART DEFECT
VASCULAR PROBLEM

i'm not a doctor these are just random thoughts.


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