Hi MJS:
My 15 year old daughter was diagnosed in March 2000, the moyamoya showed up on a MRI scan. When she has MRI's now they use a contrast to make the scan clearer. We were told that an angiogram is the only test that shows the clearest pictures of moyamoya but they don't like to do these as often because of the risk. I wish you and your family all the best.
Tricia

Hi MJS,
I am sorry to hear about the pain that your sister is in, she is truly blessed to have such a loving and caring sister like you, I wish I could help answer your question about the pain but I have no idea, I hope the Doctors will soon pin point the problem for you.  As far as diagnosing MM, the radiologist that read my MRI was the first to suggest possible MM, then my neurologist decided to do the angio to confirm this diagnoses.  I hope this helps some.
Hugs
Kathleen

Hi MJS-
I had an MRI and MRA and although they did not confirm MM, they definitely showed a problem and led us to an angiogram and SPECT scan.  The doctors I work for (50 ER doctors) have told me they are now more alert in looking for MM and consider an MRA to be the ideal first step.  I am thinking of your entire family during this tough time!  Hang in there!  You are in my prayers!
Chelsie

Well, I guess I will post this here.sense in making another post.  I sit here in my silent house. Everyone has gone to work and school. My sister, Bonnie, the one with Downs, has taken a turn for the worst. Here is the story, I will try to make it short.  She has been having the pains in her back and lower abdamon. The morphin didn't help it. Well, Monday night, we found out what the pain was about,,, still not why though. Her whole body was in severe pain. For two and a hale hours,, she was racked with body cramps. You could actually see it start in her shoulders and move down her body to her ankles. Her body was completely rigid. The only thing that we could move were her toes and head. For the women,, it looked like labor pains,, the tighenting , then the release. Every 60 seconds. We tried everything we had here. She was in TERRIBLE PAIN!!!!!! It is the worst thing I have ever seen in my life. Finally, we got her comfortable. BUt then she had a temp shoot up to 103. Got meds in her for that. She finally went to sleep. Had been in contact with Hospice the whole time. At 2am she was moaning in severe pain again. But also in a drug induced sleep. At least that is what we figured. At that time, I called hospice again,,, at 4am there was finally a nurse here. Had to give rectal meds,, she could not swallow.  Morning time,, not able to get her too wake. When she did,,, she still was not able to open eyes,,, only moan with pain. Nurse arrives,,, we change meds,,,, patches and rectal. Nurse witnessed the body cramps. She is amazed!!!  Has never seen anything like it. By 4pm  she is completely out. Maybe a coma,,, don't know. Put in cathater,,, barely any output. Is on oxygen. No responses from her in any way now. Try to sleep,,, she has a rattle now on her left side (chest). Temp is still up, but holding at 99.9 Her normal temp is 97. Hands and feet have no pulse,,,,. But at least her body is relaxed. So I sit here, in the quiet house. Will not fix her breakfast today. Will not dress her, or watch Mary Poppins  with her. It is just her body and I for now. I guess God is maybe giving me a quiet time to try to adjust to saying goodbye. And then again,,, maybe she will come back for a while longer. Will have to wait and see. Hug all your loved ones. I am so happy to be able to say my brother will have his surgery for this MM. But I am also afraid this will scare him more than he needs. But we are a strong people. Come from hard Stock. LOL Will updata as I can. Sincerely MJS

I believe you are right MJS, this id your quiet time to say your goodbyes and to help begin closure.  You will be in our prayers and I fear that your next post will bring bad news as a terrible process has begun with your sister.  Say your goodbyes and remember all the good times and the smile as best you can during this hard time.

Words cannot express the sorrow I feel for you and your family.  God certainly knew what he was doing when he placed your sister with your family, I am absolutely sure that her life was filled with happiness and love.  I truly am sorry for the pain you and your sister are going through right now in the process of her leaving this world,,,Take this time as you said and say your personal goodbyes, it is never easy even when you think you are prepared for the end, but rest assured that God has your family in his hands and my prayers are with you right now, hoping that it will bring a small amount of comfort your way.
Tight Hug ,
Kathleen

Dear MJS,

My thoughts and prayers are with you & your family as you go through this time of change and well deserved peace for your beloved sister.  Sincerely, deb

  Thank you for sharing with us.As always you and Bonnie are in my prayers.I am so sorry for all that you both are going through.You are two amazing people with strength and faith that fill my heart. your posts hit a very special place in my heart,my daughter alos ahs down syndrome.
Mary Grace

Thank you all so much for your prayers. Believe it or not,,,, they have helped in so many ways.   As I said,,, as of the time she had the body cramps on Monday,,, she was unconsuch(sp!!!) after that. The next, when the nurse saw them, her meds were changed. That did help. But as the meds would wear down,,, you could see the signs of pain coming back. So more meds were given. She never woke up, but let me know when it was time for the meds. She would let out a strange sound, and it was LOUD! But then, meds would relieve it again. I know she was aware at times that I was there and helping her as best I could. Yesterday,, nurse comes by, tells me her body is shutting down. Tells me how, with cancer patients,, they will stay alive until whatever is keeping them here is done. The there is a "brain thing" that will cause the bodys temp to go up and down.  Then, when all was quiet and the patient was alone,, they would depart this world. I made a few calls to tell friends and family.  EVERYONE CAME!!!!!!!!!! I started to get upset,(I was also exausted at this time also),, but then I reliazed it.. All these people,, kids,,, noise,,, were commom for our home.  We have not had this for a long while. So I just let them all be. There were many tears,, and laughter. Many stories told. Her dog chasing the kids and barking at them. More tears,,, then goodbyes. Finally, all is quiet. I lay on my cot by her bed. My daughter would not leave. Her two little ones asleep on the couch. Remember, Bonnie is in a bed in our livingroom. My husband goes to bed. My daughter ( her name is Starr), kicks back in recliner. Watch tv for about ten minutes,, but we are worn out. Turn off tv.  Ten minutes later,,,   Bonnie lets out a fairly loud sigh. We jump to her side,,,and she is gone. Finally check her heart,,,, no sounds. Funny though. I thought I would fall to pieces. But I kissed her(probably a hundred times), as does Starr. I tell her I am proud of her for finding her way home. Of course, I had to hide in the bathroom when they came to take her, but my son came in to help also. As did my stepdaughter. She had what she needed. A normal day with family and friends coming and going. Then a quiet night. She left us at 11: 24pm on Thursday, Feb 17, 2005. YOur prayers helped bring about what was needed. And to help her find her way home. That is what she has wanted for a long time now,, but she thought I had to take her there. I am so proud of her. It was peaceful,,, and she looked so good. Her color was perfect. My honey is at home again. Thank you all so very much. I will keep you updated on my brothers surgery next month. I could not have done all this without all of you. You are wonderful people. Again,,,, Thank You,,,,,,,,,,,,,,Now, when I get through this,,, My new journey in life begins. And it will be better, for I have known her.                MJS

Dear MJS,

Words are difficult to find right now, but what a poignant narration you've given of the end of Bonnie's life.  I'm so glad she's not in pain any longer, and the vision of her being surrounded by all of you - family, friends, even barking dogs is just wonderful.  It sounds like it was peaceful, like the end of a long day, and she just relaxed and went home.  I know that her life was a gift, but the gifts you gave her are also immeasurable.

Once your sadness subsides, I hope the joy you had in knowing her is what you, your family and friends are left with.  I didn't know her, and haven't met you, but I know God put you two together for a very special reason.  Her reward in heaven has started, and she'll wait for you to join her again someday.

We'll continue saying prayers for your family's strength, and especially for your brother's successful surgery.  I hope you stay with us, because you are an important part of our MM family!  You speak of the strength of our prayers for you, but we also get strength from your wonderful, selfless example.

(By the way, we know your sister's name and your daughter's name . . . I would love to know your first name someday! )  Peace be with you.

Many, many hugs,
Jill

MJS,

I wish I had the right words to express what's in my heart right now, but I can’t utter a single word that hasn’t already been said or felt by the others in our mm family any better than the way they've expressed it. But I do know that because I’ve known you and Bonnie through your posts…it’s helped make me a better person and has kept me focused on what's important in life. What a precious gift you've given me through all your pain and sorrow, I must thank you for that. God bless ya! I hope I don’t offend anyone by saying this, but I can only speak from my heart and my beliefs, and they are that, I truly believe Bonnie is now perfect, healthy and whole, and she’s smiling in Jesus arms right now, safely home.

My continued prayers for you, your brother and family.

God bless,
Mar

MJS,
         I cannot even get out what I want to type. God Bless your whole family.
                 Nancy