Welcome, Guest. Please Login or Register
Moyamoya.com
 
NEW search box below... Search Moyamoya.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday ListDonate  
 





Page Index Toggle Pages: 1
Send Topic Print
Diagnosing Moyamoya (Read 1882 times)
Antigone
New Poster
*
Offline


Cathy B.

Posts: 2
Tulsa, USA, OK, Oklahoma
Gender: female
Diagnosing Moyamoya
Mar 22nd, 2008 at 4:22pm
 
Hi Everyone,

My name is Cathy and I'm new here.  My mother is GrannyBowman, well, I call her Mom...lol.  Anyway we are certainly concerned about my sister, Sherry, who has had progressive illness in the last nine months.  I called her neurologist to find out why he is hesitant to do surgery.  He said she has a positive ANA level which indicates a connective tissue disorder and he doesn't want to send her into a risky surgery without finding out what is going on.  He has ruled out Lupus, MS, and ALS, but feels something else is causing the MM.  I believe she needs the surgery soon regardless of the cause, but well...that's why I'm writing.  Has anyone here had a similiar rise in ANA, or other connective tissue disorder? 

Thank you,
Cathy
Back to top
  

Cathy B.
Antigone11  
IP Logged
 
KTiller
Senior Poster
****
Offline



Posts: 355
Freeland, USA, usa, 51, 28, WA, Washington
Gender: female
Re: Diagnosing Moyamoya
Reply #1 - Mar 23rd, 2008 at 4:22pm
 
Hi Kathy,
I'm sorry to hear that your sister is dealing with moyamoya. I can only tell you my story and hope that it helps her to seek the opinion from a moyamoya specialist.
Late last Fall, I had surgeries on both sides with Dr. Gary Steinberg at Stanford Hospital. My neurologist also was unwilling to give a diagnosis of moyamoya. He told me he thought I had atherosclerosis, due to many years of high blood pressure and more recently slightly high cholesterol - both of which were well under control. He prescribed aspirin and Plavix (clopidogrel), then told me that when I had my next stroke to go immediately to the ER. There was never a question of my having another stroke, only when it would occur and how devastating it would be. Fortunately, I found the words "possible moyamoya" mentioned several times in my medical records. I did research at the University of Washington Medical Library where I continuouly encounterd Dr. Steinberg's name in connection with adult moyamoya and found this website.  I called the Stanford Moyamoya clinic and overnighted my test results and CDs containing the MRI/MRA and angiogram to his office on Friday. Monday evenings Dr. Steinberg and his team review all records received the previous week. His nurse, Teresa Bell-Stevens called me that Monday immediately after the coference and told me of Dr. Steinberg's opinion and recommendation. My surgeries were scheduled and I was in surgery within a month. They take this disease and the immediate risk of stroke very seriously and act accordingly.
I've asked myself repeatedly why my neurologist was so reluctant to consider surgery - I can only conclude that it was ingnorance.
You can contact Dr.Steinberg's office and ask for his opinion regarding your sister's ANA and other test results. He charges nothing for this service.
Best wishes to your sister and your family and Happy Easter to you all.
Kim
Back to top
  
 
IP Logged
 
Skay
Junior Poster
**
Offline


I love YaBB 1G - SP1!

Posts: 87
Evansdale, USA, usa, 323, 119, IA, Iowa
Gender: female
Re: Diagnosing Moyamoya
Reply #2 - Mar 23rd, 2008 at 10:28pm
 
Hi Cathy,  I have visited with your mom online a few times. Kim has given you very good advice on what to do. Don't wait around for the neurologist. Contact Dr. Steinberg. Tell GrannyBowman I said hi and you are all in my prayers.
Sharon
Back to top
  
hotdog  
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print



Moyamoya.com Forum » Powered by YaBB 2.4!
YaBB © 2000-2009. All Rights Reserved.


©2003-2018 Web Vision Enterprises LLC All Rights Reserved. All information on this site is protected by international copyright laws. You may not re-distribute any information from this site without written permission from Web Vision Enterprises LLC and the webmaster of this site. Violators will be prosecuted.

You may view our privacy policy and financial disclosure statement here





Valid RSS Valid XHTML Valid CSS Powered by Perl Source Forge