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Cerebral Palsy
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hawiian_girl11 posted:
I had another visit with my neurologist in PHX and he caught something that was not in my gait before. weird limp amd not it is not from my surgeries. IT is distincnt. I was dx'd with a very mild form of CP.

What is next. Sheesh.

My head was measured to be fitted for a helmet and I will have to wear it ALL the time. HE noticed that I loose my balance backwards but do not fall. IT is onne or 2 steps. but he is afraid that that could cause me to fall and hit my head on something in my house and after I stp back from the loss of my balance those 2 ateps.

he wants to run a MRI On my brain but he has to shut off my VNS but that is NOT good and if he does do that he has to run Valium thru an IV to keep me from having szs and they will have to hurry ut up with that test.

just thought I let you all know that one more thing has happened to me.....again.

Nancy
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dancer86442 responded:
Isn't CP co-morbid w/ Epilepsy? common to each other? Bummer about the Helmet. I recall when you had to wear one b4. You didn't like it too much back then, either.

Nancy, like it or not, you Need the MRI. It doesn't take That Long, if done properly. My thoughts are w/ you. Stay strong! You will get thru this, too. We will be here w/ you!

Love candi
November is Epilepsy Awareness Month Wear Purple/Place a Purple light in/on home/businesses. Encourage others' to show Their support
 
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hawiian_girl11 responded:
also my moomhas always told me to quit walking on my toes on my lrft foot. if Idid not then I would shuffle. the ankle and fott would pull up. it has happened all my life. everyone ha slaways given me a hard time about it. Now something is being doen about it. tests are being run and I am beng fittend for a leg brace to make it so my foot and ankle don't pull up when I walk it will make them stay down.

people on anpther site that is a support group that I brlong to sre giving me a hard time about this and asking nosy questions that are not their business. and how they came up with this dx just by the limp. there is more to it than that. but I was not in a good mood and did not want to give them the info.

I wich people would not be so ignorant about certaina things and epilepsy is NOT included because we all understand each other.

I am 40 yrs old they do not believe that and they do not believe that I am married for 18 almost 19 yrs and had a child that died from JME and that I live in Hawaii. they think I am making this all up and I don't know what to do. I don't want to leave but at the same time they are real pain in the butts and I can not stand their nosyiness. what should I do. help!

any suggestions?

mahola.,

Nancy
 
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dancer86442 replied to hawiian_girl11's response:
Hi Nancy,


Unfortunately, the world is full of ignorant ppl. What's worse, is they don't wanna Learn. You can't fix stupid! Then again, maybe these ppl are asking questions, because they Want to Learn More about CP &/or how it is Diagnosed.. That is Not being 'nosey'.


I recall when you joined us that you had this same Issue. PPL not believing you. Obviously, they don't want to know or don't care to know you. What I suggest is, if you don't want to give them 'personal' history, then search the web for similar case stories & share That w/ them.


If they can't/won't believe you, they are not worth your time or effort! Find another Group!


Love Candi
March 26 Epilepsy Awareness Day Advocate
 
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hawiian_girl11 responded:
tanks candi,

I will be finding naotheri group. THey are all like that. Very into other people business and don't care about someone elses new dx unlrss it is them.

I will talk to thm but not much and tell them I will be leaving the group and finding another one. There are several on the EFA ste that I can get into.

Nancy
 
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hawiian_girl11 responded:
I got the leg brace for my left leg and have had it for about a week. back in HI for now. IT is keeping my ankde and foot from pulling up. it is very weird feeling because it is so different and they want to pull up and can't. the brace I will have top wear forever. the helmet has not been sent to his office yet I will have it the next time I go.


there is a very new AED out that is only been out for about 3 weeks now and it has been FDA approved and he is going to put me on it the next time I go. I think he is going to pull me off the Topamax becuae it has effected my memory more than he wanted. HE didnnot want it to be as bad as uit is so it wio go good bye.


OR he may just add it but by his talking he will be pulling me off the Topamax.


will keep you updated on that.


nancy


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