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Re: Doctor says I may have moyamoya. Now what? (Read 4529 times)
lynn
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Re: Doctor says I may have moyamoya. Now what?
Nov 13th, 2012 at 3:14pm
 
If I were you I would not wait six months.  I encourage you to send a copy of your mra to Dr. Steinberg at Stanford (http://stanfordhospital.org/clinicsmedServices/COE/neuro/moyamoyaDisease/contact.html).  They will review it free of charge and give you their opinion. 

Good luck and please keep us updated.
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Mary O
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Re: Doctor says I may have moyamoya. Now what?
Reply #1 - Nov 13th, 2012 at 4:24pm
 
Thank you, Lynn.  After spending the morning reading more on this forum (so helpful!), I have contacted Dr. Steinberg's office.  Teresa responded so quickly and was very helpful.  She felt my history and MRA results were certainly suspicious for moyamoya and asked that I send my MRA results, which I have ordered from the hospital.  They'll be ready tomorrow and I hope to get them to Stanford by the end of the week.  You're right; waiting 6 months made me feel very uneasy, particularly when he said to wait to see if there is any change or increase in symptoms.  Thanks for your help!  -Mary
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pamR
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Re: Doctor says I may have moyamoya. Now what?
Reply #2 - Nov 15th, 2012 at 9:50am
 
Mary, you are doing the right thing. Go with your gut. This is just more proof to me that we really need to start to try to get MM more attention in the medical community!!
Best of luck to you!!
Pam
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hrsridermom
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Re: Doctor says I may have moyamoya. Now what?
Reply #3 - Nov 15th, 2012 at 11:33am
 
Pam, Destin was interviewed for the local paper about strokes in young adults.  Even though she was lucky and did not have a stroke she was able to help in getting the word out.  The article mentioned that she has Moyamoya.  At least the name of the disease is getting out there.  I just got an email this morning that the neurology department at USF medical wants her to come to one of their meetings to speak with med students and residents so they can learn how to ask the right questions when they get patients in front of them.  Hopefully she will agree to do it.  she calls herself "the guinea pig" now but she is more than happy to help get the public educated.
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Amit
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Re: Doctor says I may have moyamoya. Now what?
Reply #4 - Nov 18th, 2012 at 4:38pm
 
Awesome, Way to go Denise! . Proud of you for the fact that you are helping spread the awareness (its very important)
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