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Want to meet other MM'ers? (Read 25069 times)
DJ
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Been there, done that...

Posts: 721
Wichita, KS
Gender: male
Want to meet other MM'ers?
Oct 21st, 2005 at 10:06am
 
As our board grows, I wanted to have a special place for people to have the opportunity to meet.

With so many people traveling to different parts of the country for surgeries, followup appointments, etc. this board will give you the opportunity to try and meet up with others who live in the area or who will be in the area at the same time.

A perfect example of topics on this board would be families going to Stanford or Boston for surgeries/followups.

Probably the best use of this board would be to create a new topic for each notification instead of replying to this initial thread.  Does that make sense?

Let me now if you have any questions and/or problems...

-DJ
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Adversity does not build character... it reveals it... †I help my neighbor and my neighbor helps someone else. Life is a wonderful circle!
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shirley
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Zephyrhills, USA, usa, 452, 280, FL, Florida
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Re: Want to meet other MM'ers?
Reply #1 - Nov 11th, 2005 at 6:40pm
 
DJ,
I think this is a great ideal,my daughter, Jeanette has MM. Her dad and I live in Zephyrhills, Fl, If you let me know what we can do were here.
                                                               Your Friend
                                                                Shirley
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Shirley c.
 
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cubbie
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2005

Posts: 168
Delaware, USA, usa, 418, 133, OH, Ohio
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Re: Want to meet other MM'ers?
Reply #2 - Nov 11th, 2005 at 7:11pm
 
Hi Shirley

Shirley,I am not DJ, But I think you can post a lot of information on the site about the 2006 reunion.
That will give the people insights on Lake Buena Vista and surronding areas.
I lived in Clearwater for about 12 years.
It may help the people researching to find places to have the reunion. Smiley

Your MM friend
Kevin
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Kevin Allen- I was so much older than,I am younger than that now,The Byrds,My Back Pages
 
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davidsan
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nixa, USA, usa, 316, 183, MO, Missouri
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Re: Want to meet other MM'ers?
Reply #3 - Nov 22nd, 2005 at 10:56pm
 
If anyone is in the Springfield,Missouri area and you need a place to stay, my door is open to you all. We have wonderful neuroligists here(Dr. Michael Luzicky). I'm not sure of the spelling of his last name, but I'm sure that if my wife would have been diagnosed properly he would have helped her.
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Take Care and may God Bless you!
david  
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melinda
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Re: Want to meet other MM'ers?
Reply #4 - Nov 28th, 2005 at 4:26pm
 
Any other individuals with MM located in Nebraska or nearby?
Melinda
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grasshopper
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chandler, USA, AZ, Arizona
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Re: Want to meet other MM'ers?
Reply #5 - Nov 29th, 2005 at 11:26am
 
davidsan-

my husband is from springfield mo as well!!! what is your name if u don't mind me asking!! it's definately good 2 know that there r great neuro's in mo bc we were actually thinking of moving back there!!!!!!
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cherub_esomonu
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Re: Want to meet other MM'ers?
Reply #6 - Dec 25th, 2005 at 1:48pm
 

    I am in the UK. i hope to come to Orlando  for the reunion and see you all and of course ask questions. I PRAY i can afford. anyone in the UK with MoyaMoya I hv just been diagnosed in Aug 05

God Bless

Cherub
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louise_and_Lydia
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my daughter Lydia is 1
and diagnosed with MM
2002

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Swansea, United_Kingdom, europe, 150, 229
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Re: Want to meet other MM'ers?
Reply #7 - Dec 27th, 2005 at 7:25pm
 
Hi Cherub ,
In answer to your question re any MM ers in UK, if u click on the map you can see who has reg in UK...my little girl Lydia has just turned 10 and was diagnosed 2002. Has just been referred to Great Ormand Street Hospital and is being assessed for surgery. We live in wales, I would love to combine a Disney Hol with the reunion but will depend on cost etc,
ps. this is a great site for all your questions, hope all is well with you at moment

Louise(mum to Lydia) Smiley
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love and hugs Louise & Lydia
 
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cherub_esomonu
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Re: Want to meet other MM'ers?
Reply #8 - Dec 29th, 2005 at 8:14pm
 

Hello Louse and Lydia

How is Lydia doing. I was in the National Hospital next   to Great Ormond when they diagnosed Moyamoya on the 25th Aug05 I was in hosp for one month and surgery was no option for me. My treatment at present is blood transfusions every 3 to 4wks co-dydamol for the headaches and bloodpressure tablet. Blod pressure has now settled and I hv never had blood pressure problems before nor headaches. No stroke. I am actually trying to get a 2nd opnion from Dr G Steinberg. Of course this is just a dream for me as the costs will determine what next.  Yes the Puff of SMOKE IS THERE IN MY SCANS !

I do pray that I go to the reunion. Like u the costs ?
Thank you very much for replying. This email business is all new to me As I am off work since Aug I found this web site trying to find what this MM is all about. Its quite depressing if the Doctors don't know much about the illness. Actually my heamotologist (sp)  monitoring the transfusions said he has never had an adult of my age to treat all his MM patients are chilgren and teenagers.  And my GP he has never had an  MM patient I am the first. How interesting I thought for me!
pls up date as to Lydia's assessment I will be praying for her.

God Bless
Cherub
esomonu@hotmail.com      
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hell_bytch_1
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Waterville, USA, usa, 527, 47, ME, Maine
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Re: Want to meet other MM'ers?
Reply #9 - Jan 12th, 2006 at 11:31am
 
[color=Purple][/color]Chad and I live in Maine and I will be having 2 surgeries and the follow ups in Boston. We are taking a bus too Boston and home
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Laura
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EllasMom
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Port Moody, Canada, canada, 68, 373, BC, British_Columbia
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Re: Want to meet other MM'ers?
Reply #10 - Feb 7th, 2006 at 3:52pm
 
Hi There!!!!

   Anyone in British Columbia with MoyaMoya??
Washington State?? Oregon?? Montana?? Alberta??
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Life may not be the party I had hoped for,&&But while I'm here, I might just as well listen&&to the music and dance.......
 
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Maryann
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Our 6 year old has MM.

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Longmont, USA, CO, Colorado
Gender: female
Re: Want to meet other MM'ers?
Reply #11 - Apr 6th, 2006 at 4:20pm
 
Anyone in the Boulder area of Colorado?  Would love to know someone with MM close by.  Our 6 year old daughter has MM and will have surgery 4/7/06 at Stanford.

MaryAnn
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Miss.Anna
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Re: Want to meet other MM'ers?
Reply #12 - Jul 9th, 2006 at 7:52am
 
My name is Anna i have MM and found out about at the age of 15. I had surgry done by Dr. M. Scott in Boston

i was wonderinhg if any of you live in around PA, MD, NJ, since that is all close to me also NY

i always thought that i was the only one who had moya moya
please if some of you could email me and we can email each other i would really like to make some frinds who have moy moya

my email is

sweetbaby@entermail.net

Smiley Smiley Smiley Smiley Smiley
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I hope to meet some new people and to hear about them . I am the only person in my whole famliy to have Moya Moya. there is no one on my mom's and dad's side who has moya moya . i feel left out . Anna
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a_longtin
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Re: Want to meet other MM'ers?
Reply #13 - Jul 9th, 2006 at 2:19pm
 
hi my name is andy i was just foundout i have mm after my stroke.
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Mar
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Re: Want to meet other MM'ers?
Reply #14 - Jul 9th, 2006 at 10:43pm
 
Hi Anna & Andy, Smiley Welcome to our MM family!

Iím sorry to hear you have MM, but glad you found us. This is an informative and dedicated website, with a wonderful group of people who have been down that same rough road you have, one way or the other. So feel free to post and ask any questions you may have and get to know us. I think youíll find it comforting and youíll meet some good people and learn in the process.

Anna, I live pretty close to you, right outside the Philly. I personally do not have MM, my niece does, but I would be happy to talk to you anytime, as would anyone else here who thought they might be of some help to you.

Andy, I hope and pray that your stroke wasnít that debilitating, and that youíre learning all you can about this rare disease, so it will help you make good informative decisions thatís best for your particular case. Thatís so important. MM is a progressive disease and needs the attention from moyamoya experienced doctors who have had MMD background and know the risks involved and the best path to take to manage this rare disease.

Again, feel free to ask any questions. No question is too small. You both are in my thoughts and prayers.

Mar
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Taly
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Re: Want to meet other MM'ers?
Reply #15 - Feb 2nd, 2009 at 12:13pm
 
I live in Oklahoma and was looking for anyone with Moyamoya close to here I can talk to. I dont have MM but my son does. My email address is Talybama@yahoo.com.

Thanks
Taly
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Ashleigh
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Re: Want to meet other MM'ers?
Reply #16 - Feb 10th, 2009 at 12:10pm
 
Hi there, my Christmas Present was to be told I have MM and would like to know if there is anyone in Johannesburg or for that matter in South Africa who has MM.
Its nice to know that my family and I are not alone in this!

Have a good day you all!
ASHLEIGH
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Michele
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Re: Want to meet other MM'ers?
Reply #17 - Feb 11th, 2009 at 10:11pm
 
There was discussion of a members map at one point, that would be so GREAT!
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21widmoya
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Re: Want to meet other MM'ers?
Reply #18 - Jul 9th, 2009 at 4:59am
 
hey everyone i am from  WOLLONGONG IN NSW AUSTRALIA!....
just wondering if there are any locals with moyamoya, i am seing dr stoodly in sydney hospital for my fdirst app in 2 weeks to have my angiogram done................. anty info about surgery or after problems realy welcome thanks ..
IF YOU COULD WRITE A LIL BIT OF HISTORY TO SHOW MY NAN SO SHE COULD UNDERSTAND THE DISEASE I WOULD BE MOST GREATFUL PLZ EMAIL ME..................
jamie-leehall19@hotmail.com   
thank you lots ,...
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jlhall
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RebeccaKay
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Re: Want to meet other MM'ers?
Reply #19 - Aug 7th, 2011 at 4:59pm
 
We live in Texas right out side of Houston. Anyone around this area????
email me ledkins@sbcglobal.net
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Amit
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Re: Want to meet other MM'ers?
Reply #20 - Jun 9th, 2012 at 5:05pm
 
We are in San Diego California. Any MMers near by?  we really need some support.
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Robert
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Re: Want to meet other MM'ers?
Reply #21 - Oct 7th, 2012 at 8:37am
 
Hi, my name is Robert Britton and I live in Edmond Ok just north of Oklahoma City. My 14 year old son Benjamin was diagnosed with MM this past wednesday the 3rd of Oct 2012. We are planning a follow up appointment down at OU Childrens hospital a couple weeks from now. Wednesday was really a shock and awe day, it has set in now and really we are ready to listen to any and all info to help get us through this rough period. From all I have read surgerys seem to help very much, but what I would like to know is how long have people put off the surgery? School just started in August and my son really doesnt want this to hurt his schooling, but on the other hand we dont want to wait if it is imperative to move forward asap.

Robert-
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hrsridermom
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Re: Want to meet other MM'ers?
Reply #22 - Oct 7th, 2012 at 8:45pm
 
Hi Robert, my name is Donna.  My daughter Destin found out she had MM right before her Freshman year of high school.  she had never had a stroke and only had it on one side.  Being absolutely clueless we decided to have her surgery over the Christmas break. She had her surgery on Dec. 22 and went home Christmas morning.  She went right back to school. Now, having said that I am not sure we would do it again.  It is major surgery.  She managed to do just fine but she definitely was not back 100%.  Also everyone is different. I don't know how advanced your sons MM is.  I would let the experts tell you.  Maybe you can wait, maybe you can't.  I do know that if he has a stroke it may take him more time to catch up.  My daughter is in her first year of college now.  She has it on the other side and will need another surgery eventually.  It may be soon it may be years.  We just watch it and hope she doesn't have any serious issues.  She worries about putting college on hold but ypu know what, they can still finish what they started even if it's a year later.  Best wishes for your son.  I hope he's handling it well. They are stronger than you think but it does hit them in ways we might not expect.  If you want to email me with any questions about teens with MM my address is djinkster@aol.com just be sure to put Moyamoya in the subject line so I don't think you are spam...been getting a lot of that lately.
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Destin's mom
 
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Arianne120
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Re: Want to meet other MM'ers?
Reply #23 - Oct 8th, 2012 at 10:52am
 
Hi Robert,

I've just been recently diagnosed too. I'm just waiting on the from m doctors. I also still need to do an angiogram. I'm sure your son is very strong, but like Donna said, it's also best for your so to take his time with his body. I know how horrible that is sometimes. I'm very impatient- and I'm just on the go all of the time. But, now that I'm learning more (thanks to Donna and this site and her daughter... plus doctors). I think we also get them in different degrees. I just had a stroke, but now I'm doing just fine. Still very scary... but there is hope. And you're right surgery seems to help alot. Best of luck and keep us updated. What are your son's symptoms? I've just started getting headaches recently... but they are not too bad. I hope for the best for you guys.
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Robert
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Re: Want to meet other MM'ers?
Reply #24 - Oct 8th, 2012 at 11:12am
 
Benjamin has had (TIA's) for about 7 years usually 1 every 2 months or so. His symptoms are the left side of his body goes numb which can last for 15-20 mins then that leads into the debilitating Migraine. At this point he can barely stay up he usually requires laying down and trying to sleep and after 3-4 hours he is usually back to hisself. It doesnt seem that they are more or less frequent, it is random and usually about 6 a year, and it usually stops him cold at whatever he is doing. He has had one since school started in August so I would think between Oct to Nov timeframe the next one will occur. He is resilant and bounces back, but he wants to do whatever we need to to help fix his condition. We are scheduled(and paid) for a trip at gulf shores alabama which he is looking forward to for Thanksgiving. I know this is serious and we are prepared as possibly we can, I just wish we had known more before now.... 7 years of this pain for my son I am really ready for it to be over.

Thanks for your comments. Robert-
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