Letter to all....from LOTSOFKIDS

[3loves 0]

My goodness Diane!! Even though it's rare, at least you know what your up against, sort of. I will google it. Of course, in my small world, I've never heard of it. Glad your getting a second consult to be sure.

I will ask the Lord to lift you in His arms and carry you. He has promised to never leave us and He is with you now.

Take care and I hope you get a good nights rest!! Keep in touch!!

~God Bless~

[lotsofkids 0]

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<TABLE style="BORDER-COLLAPSE: collapse" borderColor=#111111 cellSpacing=4 cellPadding=4 width="100%" border=0><TBODY><TR><TD width="100%">Moyamoya

What is it?

Moyamoya disease is a rare, progressive cerebrovascular disorder in which the major blood vessels leading into the brain become closed or blocked (occlusion), and abnormal blood vessels called moyamoya vessels form. The name “moyamoya” is Japanese for “cloud of smoke,” which is what the abnormal vessels look like.

Who gets it?

Moyamoya disease was first seen in Japan. However, the disease has also been seen in the United States, Europe, Australia, and Africa. Children, adolescents, and young adults are most often stricken. Moyamoya disease affects females more often than males.

What causes it?

The cause of moyamoya disease is not known. However, researchers suspect there may be a genetic link because of its high rate of incidence in certain Japanese families.

What are the symptoms?

The most common symptoms of moyamoya disease in children is stroke or repeated transient ischemic attacks (TIAs). These symptoms are often accompanied by muscular weakness or paralysis affecting one side of the body (hemiparesis) and seizures. The most common symptom in adults is stroke. Other symptoms in both children and adults include altered consciousness, speech difficulties (aphasia), vision problems, involuntary movements, and difficulty with sensory and cognitive functions. Most patients with moyamoya disease will suffer progressive cognitive deterioration and eventually die due to intracerebral hemorrhage.

How is it diagnosed?

Moyamoya disease is usually diagnosed through cerebral angiography. In this procedure, a dye is injected into the cerebral arteries. When x-rayed, the arteries are easier to see because of the dye. The abnormal vessels look like clouds of smoke.

What is the treatment?

There is no cure for moyamoya disease. Treatment is aimed at relieving symptoms and includes aspirin, vasodilators, or anticoagulants. Surgery called revascularization may be performed to restore the blood supply, but is usually more effective in children than adults.

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[Time to love me 0]

Diane,

I'm also sorry to hear that you are going through this. Many wishes are sent your way, along with strength and love.

Second opinions are always best, glad to see your doing that. Take care of yourself.. You have been through so much lately, you are one strong person.

God bless you and your family. Take care, keep your chin up and most of all... try to be positive. I'm sure it's hard to..but try.

[lotsofkids 0]

I appreciate your positive wishes : )

This is soooo hard to digest! Moyamoya is primarily a children's disease .....and mostly targeting Asians. I am an adult and caucasian!

It can transcend other populations and with adults it usually hits in the 30's or 40's. But it is a VERY RARE disorder.....guess I am just "special" : 0

I have to continue to believe that I will have good results with this (God willing)......I have a lot to do and I want to see all my kids married and with my grandbabies! I have always been a fighter ....not a quitter.

big hugs to all......diane

[beachgirl 2]

Diane,

I sure will remember you in my prayers and thoughts. I had a lot to happen to me in the past couple of years and that's when I gained all of my weight. So be proud of yourself for at least not gaining and then losing on top of that. I know it seems irrevalent at this point but once you get better you will be so proud of yourself. Always remember it God can bring you to it he can bring you through it. I had someone tell me that after I received 3rd degree burns and thought my world had ended but he did bring me through it.

We will all be thinking of you and sending you hugs.

[Cheri 0]

You're in my prayers!!

~cheri

[Mvpo8961 1]

http://www.moyamoya.com/cgi-bin/yabb/YaBB.cgi

Diane have you seen this internet forum for people with Moyamoya to chat with each other?

Myra

[vinesqueen 2]

Holy cow Diane!

I'm so glad that you were able to get a diagnosis (dx)! So often with rare diseases they take forever to dx, because it's "it's just too rare!"

Someone on my Cushing's board was resently dx'd with the same thing.

Sorry to hear about the steroids, do you know how long you will have to be on them? I HATE, H-A-T-E taking them, especially HATE taking them.

I hope you get some relief soon. PM me any time!

[RKidder 0]

Diane,

My heartfelt prayers are with you and your family. Please do keep us posted when you can. God bless you and watch over you. He will no doubt send one of his angels to keep you safe in this journey you are embarking on.

Rachel

[lotsofkids 0]

and as always....thanks for your concerns and positive thoughts. I appreciate it immensely!

mysherrijo: Oh my...3rd degree burns....that and nausea has to be the hardest to deal with. I am glad you are in a better place now...AND getting your wt issued tackled....you will always feel better when clothes actually look "good" on you. You go girl ((hugs))

Cheri: Thanks...that is the best that I can ask for....I am very calm and at peace, looking forward to having good results. Not to mention I am a stubborn, tenatious spirit and I don't quit when I set my mind to fixing something!

Mvpo8961: yep, been there and have already registered! Thanks....it is a wealth of info to chomp into and also a lot of people who have had successful surgery.....which gives me lotsa hope. PS: thanks Mv....for being one of my original buddies here on this board. Your friendship is very welcomed. : )

vinesqueen: good to see you too! True, the more rare you are....the more likely to fall through the medical cracks! Do send your Cushings friend to the web site that Mvpo mentioned. Although, she has probably bumped into it.....because so little comes up in a search.....I keep telling myself "I" am very special. They will taper me off the steroids......maybe only a month or two at most. That is a relief.....with wt issues...that is counter productive!

RKidder: I have to believe in that......and trust that everything is now out of my hands. I have no time to feel sorry for myself.......I feel blessed that we found this and I have an opportunity to correct it. I am thankful for all the good in my life (and that I have active Insurance LOL)

I am walking around my house saying "oh boya.....Momma has moyamoya"

sounds like a fish dinner....ya know mahi mahi!

warm wishes and big hugs to all......Diane : )

[paula 4]

Diane - your strength amazes me! Im not sure if you know this or not, but its OK to be scared - I would be. Yes, I have my faith - but fear of the 'unknown' is very normal. VERY! SO please know that its OK to have even a slight bit of fear. ((((HUGS)))))

Tonight I shall be making virtual dinner for you - What time would you like for me to deliver it?? (hey - its the BEST I can do)

[lotsofkids 0]

dinner....hey that's so sweet of you! And because it's virtual......we must add a decadent, ooey-goey, something chocolate DESERT!

I had one night to sort of be with my thoughts and get teary-eyed and let it get to me. Now, I need to fight the fight and roll up my sleeves.....you see I sort of plan on beating this thing! Well, that's my intention and it will be a good fight. I have a neuro appointment on Friday and hopefully I will get some more info into all this mess. The neurosurgeon appointment isn't for a few weeks, so I figure it'll be about a month before the brain bi-pass will actually be done. I am only 3 weeks post open-heart surgery so I figure I really do need some time for my body to recoup from everything that has happened.

I am pretty tough tho, the only thing that could bring me to my knees, is if something were to happen to one of my kids. I thank God it is me going through all this and not one of them. I did get shakey during that "teary" session because I was worried about my twins being so young and maybe not having a mother around....they are 10 1/2. That scares me.

Do keep me in your prayers.....it is out of my hands at this point....so I just have to trust that things will have a good result.

Hope you'll stick around a while after dinner finishes and we'll have a long enjoyable visit......I think you and I will hit it off real nice!

warm wishes and smiles.....diane : )

[princess_n_thep 2]

Diane,

You and your family are certainly in my thoughts. What an ordeal! I hope you get well soon and that you begin the health and happiness that you deserve!

HUGS!

[katt 0]

I am so sorry. My family and I will pray and I will ask my daughter and her family to pray also. You do sound like you have a wonderful attitude though. With an outlook like yours and the obvious humor you have you can overcome anything. Keep in touch when you can. Katt

[KMO 0]

Diane, I'm so sorry that this is happening to you. I wish you the best of luck and a speedy recovery. My prayers and thoughts are with you.