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Author Topic: Presley - Battle with Neonatal Lupus  (Read 6551 times)
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« on: January 19, 2009, 04:36:16 pm »

 sobbing Have a hanky ready.... What a precious babe!


http://www.youtube.com/watch?v=5Ksr6h4NaJ0
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
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« Reply #1 on: January 19, 2009, 05:39:27 pm »

Dystoniahttp://www.torticollis.org/

Some of you who know me personally, know that I have what is called "Dystonia Storms"
There is no warning, generally it starts at the back of my head like my head is on a string and someone is pulling that string to make my head go backwards.

What is known to trigger mine is cold weather and stress. My first Dystonia attack happened on our wedding anniversary about 6 yrs ago.In public of all places, we were celebrating our wedding annivesary up at Jackson Ranch Casino. Dave took me immediatly to our room. When I warmed up and calmed down and after I slept, I felt like nothing had happened.
It is during the Dystonia attacks that it is sooooo painful.
Kind of like having my Grand Mal seizures, after cleanching my jaws during an episode I would sleep for 4 hours with my jaws aching and a horriable headache..(I've had those since I was 16 yrs old)

Like Lupus, there is no cure, the old Artane med used for Parkensons disease patients. It works for me to help ward off Dystonia attacks.
Dystonia is a nuerological disorder.

To give you a visual of what my Dystonia looks like, I found the best video closet on You Tube. I had Dave come look through videos with me so I can show you.
He said in this video http://www.youtube.com/watch?v=BXgNY1cdJKE&feature=related  
my neck and throat is doing what Amy's is doing exactly looks like it.
(NOTE~I have photos somewhere of my attack happening showing my throat doing what Amy's is doing
Her You tube is http://www.youtube.com/ShakeyAmy)

My Dystonia actually starts with either one or both sides of my neck being pulled backwards or/and my left shoulder shaking uncontrollably.
Then my facial muscles are pulled back thus creating my face appear flat during an attack.

I cried when I saw this video when Amy was trying to breathe as that is one thing that made me remember what it was like, you feel you are being suffocated.I haven't had an attack in a few years.
(Knock on wood)
But after I posted this video on baby Presley I got to thinking, "maybe some of the readers don't know what Dystonia is".

~Kathy
« Last Edit: January 19, 2009, 05:50:07 pm by Adminஐﻬ » Logged


I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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« Reply #2 on: January 27, 2009, 01:31:37 am »

thought i would let you know i have been talking with presleys mom and from the damage lupus did so early on she now has cerebral palsy..
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DX: Lupus(dx:'03) poss Mctd(06),Raynaud's, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage II Lupus Nephritis. Stroke('06)Seizures('06)Photosensitivity since childhood, vasculitis, gangrene left thumb waiting for autoamputation
Meds: Diovan,Lisinopril,Hydrochlorithiazide,Clonidine,Keppra, Plaquenil,Prednisone 60 Mg/Day,Miracle mouthwash,Xanax, Darvocet,Lidocaine cream, Xopenex inhaler, Xopenex Nebulizer
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« Reply #3 on: January 27, 2009, 10:14:12 am »

thought i would let you know i have been talking with presleys mom and from the damage lupus did so early on she now has cerebral palsy..
Amy,
Thank you for telling us that.
Do you know what the Dr. concluded which Presly has, the spastic diplegic cerebral palsy or dystonia?
Or both?
She sure is a beautiful girl who tugged at my heart.
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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« Reply #4 on: February 06, 2009, 02:31:18 pm »

she has spastic diplegic cerebral palsy bbbut she also has dystonia too..
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DX: Lupus(dx:'03) poss Mctd(06),Raynaud's, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage II Lupus Nephritis. Stroke('06)Seizures('06)Photosensitivity since childhood, vasculitis, gangrene left thumb waiting for autoamputation
Meds: Diovan,Lisinopril,Hydrochlorithiazide,Clonidine,Keppra, Plaquenil,Prednisone 60 Mg/Day,Miracle mouthwash,Xanax, Darvocet,Lidocaine cream, Xopenex inhaler, Xopenex Nebulizer
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« Reply #5 on: May 26, 2009, 02:18:02 pm »

bumping up a baby who has lupus.
educate us all in Neonatal lupus
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
lupusjoy
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I AM BLESSED AND SO ARE YOU!!


« Reply #6 on: May 30, 2009, 03:50:15 pm »

OH WOW AMY ,YOU AND THE FAMILY ARE IN MY PRAYERS  :angel:AND NO THAT GOD WILL BE WITH YOU ,AND THE FAMILY THREW THE GOOD, AND THE BAD TIMES BUT MOST OF ALL WE HERE ON THE LOOP WILL KEEP YOU IN PRAYERS ,BECAUSE WE UNDERST,AND WHAT YOU AND THE FAMILY ARE GOING THROUGH ,STAY BLESSED  angel,AND NO THAT I LOVE YOU AND THE BABY AS WELL((TESA))
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I JUST WANT TO SAY TO YOU ,WHEN YOU FEEL SAD JUST LOOK UP, AND ASK GOD TO GIVE YOU JOY ,AND HE WILL GIVE YOU THAT...STAY BLESSED,And be not afraid;go tell my brethren that they go in to Galilee,and there shall they see me .....
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LupusMCTD Founder & Patient
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