;) Just to let you all know, I had the sisiter with Downs who we found out has Moyamoya. Her age and condition do not make it able to do anything for her. So we have her home, with NO doctors involved. Her only instructions when relaesed from hospital, was to have her thyroid rechecked in 6 weeks. Anyway, we were told she would continue to have mini strokes, or major ones, till they take her out. She came home from the hospital May 1st.  I am happy to say she is doing fairly well! She has spells where suddenely she is dizzy, or her legs " won't work" . We are having problems keeping her kidneys and bowels running smoothly. I wish she could tell me when she is having problems with them, but it is mostly guess work for me. She will also go into a trance like state at times. But,,, SHE IS HAPPY! She is content, of course she doesn't understand that there is something wrong with her, so that is a blessing(kinda of). I have not recieved her records as of yet. Apperently our hospitals are slow. But when I do, I WILL contact one of the doctors I was told about on here. Until then, I will keep you all in my prayers, and hope you will do the same for us.
SINCERELY          MJS

MJS~

Thank you for the update; I’ve been wondering how you and your sister were doing. I would never begin to know what you’re going through, but I just had to tell you how you and your sister set a tremendous example of the spirit of love through all the adversity, it touches me so! Please know you both are in my thoughts and prayers always.

God bless,
Mar

Hey everyone!I guess I am the newest member, so it is nice to meet everyone. My mom has had two massive stroke/bleeds in the past two years and they are telling us MM is suspected, but they aren't giving us a definate answer. I have just e-mailed Dr. Stienburg and am waiting on his reply, but I was wondering if any of you know about any MM patients who have had bleeds and had surgery and if so how are they doing?

Hi Nikki,

How old is your mom and where does she live.  My sister has mm, had a severe stroke, then the surgeries at Mayo Clinic.


Janice

MJS-


wrote on Jun 7^th, 2004 at 12:27am:

but I just had to tell you how you and your sister set a tremendous example of the spirit of love through all the adversity

Amen to that!  You are in my thoughts and prayers as well!

-Shari

MJS, you and your sister are in our prayers.My daughter has Moyamoya, she was also born with Down syndrome.Your story has really touched me.I agree that you and your sister a such a tremendous example of love, and a great inspiration.I hope My daughter and her siblings will stay as close and loving as you and your sister.YOu are so lucky to have each other.Thank you for the update.
Mary and Kahtleen

MJS,
        You are absolutely an inspiration and no matter what her state of mind she knows how much you've done for her and will always look out for you. Your love and kindness and caring is unbelievable regardless of her being your sister. You are a special person. My thoughts and prayers will continue to be with you.
                        Nancy [smiley=hug.gif]

::) Hello to all and thank you so very much for your concern. I was totally taken back by the sensitive feelings I got just from your letters.  I felt so much love from them. You must all be some very special people. Maybe this disease is meant for only the best of hearts, the caring ones. Anyway, thank you so much. we are just learning that the strokes effect the bladder and bowels, in strange ways. But, everyday is an education. Take care and thanks again     MJS

mjs452,                                                                                              Mandys bladder has been affected by her strokes also we have to try to get her bladder to shrink back to size because the muscle was affected by her strokes so her bladder holds for 5 or 6 hrs. at a time which has caused it to stretch. I'm sure it will be another long road but your right you learn so much. Its always something though it seems to never end, but I know its nothing compared to what your going through.
                                            Nancy :-/

you are a wonderful loving sister and an inspiration to us all maybe you can contact one of the drs on this web site if you havent already and get a second opinion my son jared has downs syndrome and moya moya also i hope that if need be that his sisters will be as wonderful as you my prayers are with you your sister and your family          
                                           god bless
                                               donna

;)Good to hear from people. I am interested on the bladder thing going on. Today we put her on med for urinary infection. But I was told about how a stroke can affect the bladder(and everything involved with it). Something to do with messages from the brain and also nerves not responding. That at times, one problem, is the fact that the bladder may not be emptying all the way each time, so it does hold more. I have recently found an article stating that Downs are more prone to developing MM. It was found on the Google.com As are a number of other things. It was explained to me, and maybe next time I will try to gointo it more. But need to get to sleep now. Will have a long morning tomorrow.   SINCERELY!!!!!!!!!!!!            MJS

MJS452,
              I e-mailed Mary Grace Mandy's whole last experience at the Urologist which we are new at. Mandy is incontinent since her strokes, I will see if see can forward you that e-mail, it has all the stuff the Dr. said.
                          Nancy :)

MJS452,
                 I need you to send me your e-mail address so I can give it to Mary Grace to forward the info. Thanks.
                                    Nancy

MJS452,
              I didn't forget about you my computer is acting up very bad, I did just e-mail Mary Grace so she can e-mail you the info. of our urologist visit experience if she doesn't have it I'll e-mail it to you.
                        Nancy :D

Hi MJS452, my mom has mm and since her first stroke/bleed she hasn't had any trouble with her bladder, but she has had problems with constipation and nausia and vomiting. The nausia and vomiting basically disappeared, but it took a long time, until she had this second stroke/bleed two weeks ago and now were are fighting it and the constipation agian. Best of luck to you and your sister.                    Nikki

:o Hello there Nicki<<<<
I am so glad to hear from yu. We are also having the consitpation problems. It has gotten pretty severe. I give her Milk of Magenisa everyday,, sometimes several times a day. Have tried prune juice and stool softeners. None seem to help.  Seems strange that these problems are common with strokes. Sure wish they would have told me to look for this when she came home. There was no mention of it at all. Even though I speciffically asked them about that! I only asked because first, of her cath. in her for the urnine, as I know it is common to have problems when they are removed. And the other, because she hadn't eaten much. But thank you for letting me know it is not abnormal(whatever that is!). It makes me feel better.  Sincerely MJS

MJS452,
             Marygrace cannot find the info. sorry it took so long my computer is still acting up and I had family in from out of town for 5 days I will private e-mail you today. Sorry for the delay, and also Mnady has cronic constipation and the urologist says that can affect your bladder and other organs such as kidneys, pancreous (sp) Liver ect. as can holding urine for 5 plus hours because of incontinence. Over a period of time of course.
                       Nancy