Hey everyone, I found this site via that wonderful NY Times article.

Anyway, I haven't been diagnosed with moyamoya but after reading that article, I kind of neatly fit into a lot of the categories described.

My symptoms started about 2 1/2 years ago.  It started with a twitching in the scalp which kept me up all night.  It then progressed to headaches.  Not headaches in the traditional sense but more of a pressure in the back left side of the head (where the twitching was) that radiates to the front of my head and around my eye, sometimes causing numbness there.

I've been having these problems ever since, with other symptoms such as pains in my legs, numbess in my extremities, haloed vision (rarely), dizziness and some others.  I'm so far removed from baseline that I don't even know what normal feels like anymore.

So I've had just about every test you can have.  Multiple MRIs, SPECT, a billion blood tests, spinal tap, and probably more that I can't think of right off the bat.

I've been diagnosed with greater occipital neuralgia, insanity, migranes, tension headaches and the most recent flavor of the month, Lyme disease.

I've taken a ton of medication and nothing has worked to alleviate my symptoms.  I'm still being treated for Lyme disease but it's a clinical diagnosis, not a definitive one.

So, why am I here?  Well, I read the NY Times article and neatly fit into a few categories.  I'm 33, my symptoms started very suddenly, came out of nowhere and I have some of the symptoms described in that article.

Question for the board:  Is it possible, through all the tests that I've had that something like moyamoya could be missed?

Thanks!
Tom

Hi Tom...welcome to MM.com  .

The spect test shows the blood flow...it was the one test that prompt them to have my daughter have another cerebral angiogram and MRI.    She had routine MRA's which shows the arteries throughout.  The MRI would show if she had strokes...but by the time she had an MRI they would have disappeared.....the MRA showed "narrowing".  The angiogram showed the whole network.

Cara's spect test showed that her right side was getting 10% blood flow and the left side about 80% blood flow...and then they compared it to the two year old angiogram which the left side hadn't progress yet...so they suggested another angiogram and MRI (as she was started to have noticable TIA's)......and immediately after those two tests.....it confirmed the worst....that the flow on the rightside was actually coming from the left side....the right side was 100% occulded (blocked)...and the left side was starting to narrow....and the MRI showed plenty of white spots meaning she's having little strokes.   

If I were you I wouldn't sit on this.  It is not a wait and see disease...its a progressive and progresses at different rates for different people but if your doctor never mentioned "moyamoya"...maybe you can ask him.  Then you should look on the list that DJ has on this website on all these MM specialists...contact one of them for second opinion...its worth asking.

Cara had zillion of tests too...innumberable number of blood tests...and mainly all negative, her possible choices of disorders when on and on...then eventually narrowed down but I would have pursued the "MM specialist opinion" sooner now that I have kept reading and reading about this.

Ask away...any questions...all of us have been touched by it in so many different degrees, so many different suggestions from our regular doctors....and the end result is still MM for all of us.

CarasMOM

Hi Tom....and welcome to the moyamoya boards!  Glad you were able to find us.  Good to know that the New York Times article is already starting to work for what we are trying to accomplish.  

I will tell you to read as much as you can on this website.  It will be so very helpful to you in the long run.  Please make sure you ask your neurologist if she is familiar with moyamoya.  If she has no clue what the disease is, then definitely seek a second opinion from one of the neurosurgeons listed on the website.  

I went through the same problem.  I was having symptoms similar to yours and then was in the hospital numerous times for millions (it seemed like) tests like MRI/MRA's, Cat Scans, angiogram of the brain, blood tests, urine tests, spinal tap, etc.  Because my neurologist was not familiar with moyamoya, she could not diagnose it and was looking for vascular diseases, rheumatoid diseases, and even sending me to other different doctors.  Finally, one day my neurologist asked the neurosurgeon to look at my scans, and he felt that I have moyamoya.  She came down to tell me this information and admitted that she did not know what moyamoya was and would have to read up on it.  

When I was released from the hospital, I stumbled upon this website and began reading as much information as I could.  And within 4 weeks, I was on a plane and scheduled for surgeries in California with Dr. Steinberg.  

There is no reason why you can't move on this quickly!  None whatsoever.  All you need to do is go to your neurologist and ask for copies of your MRI's and send them to one of the specialists listed on this site.  I sent mine via Fed-Ex and within 2 days the nurse coordinator for Dr. Steinberg called and let me know that I definitely had moyamoya on both sides of my brain and that surgeries were recommended.  Like I mentioned before within a month or less I was on my way to Stanford for bypass surgeries.  You must move quickly to avoid having a major stroke.  When I went to my consultation with the local neurosurgeon, his exact words to me were "I'm surprised you haven't had a major stroke yet.  Come back and see me in six weeks to see what we should do."  I learned later from Dr. Steinberg that if I had waited, I would have had that major stroke.  He said I was on the verge of one before I came out there.  

So....please.....react quickly and read, read, read.  We are all here to answer any questions that you might have.  Do not hesitate to ask as no question is stupid!  

I will be praying for you and your family.  Please keep us up-to-date on how things are going.

Yes, you should send your actual scans.  That's what I did anyway. 

Look on the board for Dr. Steinberg's information under surgeons.  Also, his email address is gsteinberg@stanford.edu.  If you email him and let him know that you suspect you might have moyamoya and are seeking a second opinion, he will tell you where you need to send the scans and who to send them to.  He usually will respond pretty quickly, but I can't gaurantee that.

Michelle

Great Tom !!!! You are on the right track....and I'm sure Kathleen will fill you in more details....especially when her insurance company balked  at first.....just keep at it as it is important to have a doctor familiar with MM.  Will keep you in our prayers, too.   CarasMOM

Hi Shauna & Tom, 

Welcome to our family. Unfortunately, all the symptoms you both mentioned could be possible signs of moyamoya disease.
DJ has a post of the general process:
http://www.moyamoya.com/cgi-bin/yabb/YaBB.cgi?board=news;action=display;num=1086889571;start=0#0

My advice is always to read all you can about MM. If you're well informed, less chance of a misdiagnosis, that we all too often see. Seeking a doctor with MM experience is a must with this disease, preferably a MM specialist, IMO.

I'd also suggest watching the Matthew Fong video, it's very informative. It helped me to understand so much when I first learnt of moyamoya. Lot's of other info here on the website, and also many beautiful people willing to help in any way they can.

Please keep us posted. You're in my thoughts and prayers.

Mar

Dear Tom and Shauna,

Welcome aboard to both of you!  I'm sorry to hear of each of your individual circumstances, but VERY glad you've found your way here!

My daughter was diagnosed with MM last May, at age 17.  The diagnosis came 8 months after we started pursuing it.  (Before that, she had been diagnosed with migraines at age 6.)  Even given the fact that she had migraines for 10 years, her first MRI came about in 2004.  The MRI showed that she'd had 2 small strokes.  The strokes were very old, possibly having occured before she was born, but that's what started the real pursuit of something other than just migraines.  Fortunately for us, the MM was detected before a major stroke hit.  Two weeks after her diagnosis, Tara was in the first of two surgeries at Stanford. 

The majority of the medical profession is very uneducated about MM.  Some of the best, most reputable physicians just don't know it even exists!  My daughter's neurologist (a wonderful guy/doctor) had only seen it once before.  It is up to you to be your own advocate and, as suggested previously, seek out the advice of an expert - someone who sees this disease on a DAILY basis.

The moral of the story is, don't hesitate to get MM ruled out!  Left alone, it can have devastating consequences.  My daughter's case was also symptomatic.  We excused many little things (tingly fingers, etc.) and chalked them up to all kinds of things (eating habits, exercising out in the sun, you name it).  In retrospect, she probably should have had surgery much earlier.  There is not a day that goes by that we don't say thanks for such a positive outcome.

You are both in my prayers - for your good health, and that you get answers to your questions.  Please don't hesitate to come here for support . . . anytime!  My best wishes to each of you as you pursue your individual situations.  Please keep us updated as you are able to.

Warmly,
Jill 

     

I am so confused, Have been looking in on your site, am just curious if anyone could tell me the closest location to Paducah, KY for any neurosurgeons who are familiar with moyamoya.