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Symptoms coming back (Read 4789 times)
JennyG
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I'm 19 & Have MMD, and
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Symptoms coming back
Oct 23rd, 2012 at 4:33pm
 
Hello everyone,
I have had 2 brain surgery's on the left side of my brain. After the first brain surgery I was doing really good then started stuttering, involuntary arm movements, and my old symptom's came back. They tried to say it was Conversion Disorder, that it was in my head, had nothing to do with Moyamoya. Then when I finally got the second surgery they noticed no blood flow to the back of my brain on the left side which caused my symptoms. I was relieved that it wasn't all in my head. I started College, living in the dorms. I sleep at least 10 hours, have rest periods between classes so that nothing else goes wrong. I started stuttering and extreme dizziness again. That ended after 2 weeks. Now I have a horrible headache that radiates through the front of my face, I can feel it in my teeth. It starts in my forehead. My right arm is tensing up, usually after a while it starts involuntarily moving. My biggest fear is that this time what if it is my body giving me symptoms without it being Moyamoya. I don't know if it is just coincidence that I had my second brain surgery in January and now my symptoms are coming back. Or maybe college is stressing me out without me even knowing it. In your opinion should I leave it and hope it goes away or should I go to the doctors? Nobody took me seriously after they put Conversion disorder on me, and even though they found out that it wasn't Conversion Disorder, I have a feeling that the stigma of it will still be there. Thank you all who reply.
-Jenny
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Wearing A Red Jacket In A World Of Black And White! And They Say 'Normalcy' Is My Middle Name.
 
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hrsridermom
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mother of 19 yr old daughter
with MMD

Posts: 292
Tampa, USA, FL, Florida
Gender: female
Re: Symptoms coming back
Reply #1 - Oct 24th, 2012 at 10:10am
 
Jenny, sorry to hear you have symptoms again.  It could be a combination of things and school can certainly be causing stress but a check-up probably wouldn't hurt.  Just be firm with the doctors if they try to pull the conversion thing on you.  Sounds like you are doing a better job with resting than Destin is at school.  She is still having headaches and tingling in her face and hands.  We have an appointment with her neuro doc on Thursday.  Hang in there and I hope you feel better soon.
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Destin's mom
 
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pamR
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mom of 15 yr old twins,
one with MM

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Sellersville, PA
Gender: female
Re: Symptoms coming back
Reply #2 - Nov 6th, 2012 at 2:08pm
 
Hi Jenny and Donna!! I cant believe you have symptoms again! Did you have the other side checked? I can't remember. Anyway, listen to Donna and get a check up soon. Are you taking a baby aspirin every day? This might be nothing, but with your history I would get yourself to the doc.
  Donna, how is Destin?
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hrsridermom
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mother of 19 yr old daughter
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Tampa, USA, FL, Florida
Gender: female
Re: Symptoms coming back
Reply #3 - Nov 7th, 2012 at 11:20am
 
Hi Pam, she is going in for another CTAngio on Friday.  she's having some symptoms of tingling in her face and hands.  she will sometimes just get an sudden overall feeling of weakness.  Her doctor wants to see if the left side has progressed.  Other than that, she is enjoying college and living in the dorm.
How are Courtney and Cassidy...and you?
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Destin's mom
 
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pamR
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mom of 15 yr old twins,
one with MM

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Sellersville, PA
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Re: Symptoms coming back
Reply #4 - Nov 13th, 2012 at 9:52am
 
So glad she is enjoying school!! We have just started looking, but we have another year. Everybody here is good. Can't complain! Have you heard anything about next years gathering? Hope the angio went well!!
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hillary
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My daughter Holly has
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new braunfels, USA, usa, 279, 285, TX, Texas
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Re: Symptoms coming back
Reply #5 - Nov 27th, 2012 at 9:23am
 
My daughter also has been having TIA's for the last month as well as weakness and numbness in her left arm and leg.  Her BP has been pretty low and medication hasn't helped.  We saw Dr. Steinberg last week and he ordered another Angio and CT profusion.  It was scheduled for Jan. but they are working on getting them moved up because symptoms persist Sad  Good luck to you all!
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