Rena,

You are in my thoughts and prayers as you go through your MRI and await the results.

I know the feeling of waiting and wondering. I also live with the thought of possibly having moyamoya as a sibling.

You know you have prayers and support from your moyamoya family.

Keep us posted and in the meantime, if you just need to talk through the waiting period, please feel free to do so.  We all know what you are going through. When we have symptoms that are similar or like those of moyamoya, I believe our minds tend to run rampant and we bogg ourselves down with the "what ifs".  It's only natural because we have all been through this individually or with our children, parents, spouses and siblings. We all know what you are experiencing.

I believe "if God brings you to it, he will bring you through it". I also believe you are a strong person. For this reason, I believe you will get through this "wait and see" period by way of your strength, your faith, your painting and writing and the support of your moyamoya family. 

You hang in there and know you are in my thoughts and prayers.

Hugs,

Lore

Hi Rena,

I just want to reach out and give you a big ol'  . I know you were wondering about your headaches and how wearing your sunglasses hurt a little, but I didn't realize that you were still having them.  I know Lore and Jill have already said this, but try  not to worry.  I know it's easier said than done.  (It's easy for me to write these things to others, yet I know deep down in my  , I have an MRI/MRA next week Tuesday due to my headaches and sometimes dizziness  )  I'm trying my best to understand that I can't worry about the things I can't control.  Difficult, yet so true.

I've seen your work too, and I know that you are a very spiritual person, and it will be faith that will help you through this...just as it did with Tyler.  Just look at him...he is such an inspiration!  ;

We are here for you and will definitely keep you in our prayers.  You always have a shoulder to lean on...

Take care,
Shan

Rena -

I am still pretty new to the enrtire mm family, but I sure will be praying for you!!  Know that He will hold you in His loving hands, and that all the rest of us will be here as a super support system, no matter what happens.  Also, it is really all right to be scared and share that with us so we can help !!

You are on my heart.

Cass

Rena,

I had dizzy spells about 10 years ago.  My doctor thought I might have Minere's disease which does affect the inner ear and causes dizziness. I had an MRA and what they found was an arterial vessel wrapped around the artery at the brain stem.  They said I was born that way.

What keeps me from having that dizzy whirling and twirling is to watch my sodium intake. If my sodium level is too high it causes dizzy spells, whirling and twirling and the worst part is I once went into vasospasms.  That is awful!!! I don't ever want to go there again and I haven't, thank God!  What I have is also very rare.  I'm not trying to scare you I'm simply sharing my own experience with dizzy spells and it probably doesn't have anything at all to do with what you are experiencing.  The point I'm trying to make is these type of symptoms can be anything and sometimes nothing at all to be alarmed about. In my case, by watching my sodium intake, I have never experienced those dizzy spells again.  It was something that simple and that's the point I want to get across.  I didn't have to have surgery or anything close to it. There was a "simple" fix.  But blieve me, before I got the diagnosis and treatment (water pills) I thought I was in deep trouble.  The vasospasms are like having a stroke. I was "locked" up, couldn't speak, couldn't get out of bed etc.  To think it was simply a matter of taking a water pill.

My hope and prayer for you is that your dizzy spells turn out to have a "simple" fix like mine did.

I was diagnosed only once, many years ago with anemia. I can tell you that I was never so tired in all my life.  No energy etc. That could very well be the culprit in your case.

Please keep us posted. I am curious to know what your tests reveal.

You hang in there!

Hugs,

Lore

Hello,

Yes my prayers will be with you everyone on this website needs a  prayer weither it be someone with moyamoya or the family members of someone who has it cause its rough to see someone you care about go threw moyamoya.... good luck with the MRI and I hope you get some good news....

Rena,

My prayers are with you! 

I know that I have been worried since Trey was diagnosed.  I have a history of migraines and have had MRIs in the past before Trey was even thought of and I asked the Neurologist (post everything for Trey and via telephone) if they could tell from any of the past MRIs if there were any signs of MM.  I worry because there have been times where some of my fingers are numb and then there are headaches but I have suffered with headaches all of my life.  I haven't been to the Neurologist since Trey was born, I haven't had the money to pay the deductible for any MRIs and I am past due just for migraine follow ups.

I am sorry.  I said way to much just to say that I sort of know how scarey this is and I am so sorry you are going through this and I will keep you in my prayers.

Michell

Rena,

Just a quick message to say we'll be thinking of you tomorrow when you go for your MRI. I hope your dizzy spells are easing. The ear specialist diagnosed my dizzy spells as 'dizzy migraine.' My nuero wasn't so sure and insisted it was still my ears. Whatever it was, he's not concerned about them now as the MRI was normal plus they've stopped happening (touch wood). I hope your dizzy spells go of their own accord too.

Best wishes,

Roz

Thanks for the support. The dizzy spells have eased up but the twitching and headaches are still hanging around. I guess I will know if there is anything to worry about I will know by the end of the week. I'll let you all know what I find out.

Well the results are "normal"  ;

No MM, now I just have to find out what is causing the headaches and twitches 

Amen!  Thank you for sharing the great news, Rena! 

Please know that we're thinking of you...Let us know what your dr's feel about your continual headaches.  Regarding your twitching...My right eyebrow twitched for like 3 days earlier this week.  Of course, I couldn't control it, and it became a little irritating but it eventually stopped.  I'm interested to hear what your dr.'s think is causing it.  My internist told me that he gets them too, and he didn't think it was something to worry about, but I think he felt that it may have something to do with my healing process.

Take care,
Shan

p.s.  How's Tyler?  ;

Rena,

Oh, twitching in your hands/legs?    I have a friend here who also has MM, and she shared with me that prior to her surgeries, she had some kind of a seizure in which she would drop a cup that was in her hand at the time of her seizure.  Did you neuro mention anything about your twitching being something similar to a seizure?  I'm still new at learning about different kinds of seizures myself.  Just wondering...

Glad to hear Tyler is steadily improving.  Thanks for sharing about his experience with a lollipop..

Please keep us updated on what your dr. says...

Take care,
Shan

I have learned my symptoms are all related to my anemia. The normal iron levels are between 35 and 120 and my level was 12 after being on iron for a few months.

They ran a ton of blood test, because that is lower than the normal "lack of iron" low, of course it all came back normal. The doctor then asked if my diet was really lousy. I have never changed my eating habits, so she is one confused doctor.

Anemia can be the first sign of many different serious medical problems, that was the reason for the concern over mine. Guess I confuse Doctors as much as Tyler does.

P.S.
I haven't sold any of my painting yet, let me know if any of you are interested. I am flexible with the prices since I have never priced my work before.