Hi 808annie -

First of all, take a deep breath!  You've come to the right place for support and answers to your questions.  Welcome!  Unfortunely, everyone is different, BUT, I can share with you my experiences and maybe I can put your mind at some ease.  

When I was first diagnosed (I was twenty-eight) I experienced a numb, tingling feeling on my right side.  I had lack of coordination (when I tried to put my makeup on I looked like a clown!) and difficulty writing and typing.  I had also been having frequent headaches.  I made an appointment with my doctor and he did at first mention MS.  He said that I was the right age to which MS could start becoming symptomatic.  He sent me for an MRI to rule out MS.  I believe many people's symptoms present like MS - and when they go to their doctors are sent for MS tests before they are officially diagnosed with MM.  When the results came in (I got a copy of the report which mentioned MM), my doc said that it definitely wasn't MS, but that my results were abnormal and referred me to see a neurologist.  He also put me on aspirin right away.

I made an appointment with a neuro in my city and he ordered me a battery of blood tests, an additional MRI, an MRA, and an Angiogram.  Angiogram is the test that would lead to a definitive MM diagnosis.  When my neuro gave me the definite diagnosis, I went for a second opinion.  

This is important - it is VERY IMPORTANT that you see a MM specialist - someone who is very familiar with MM.  Many docs are not familiar - so be careful!  (On the main MM Message Board these is a link to a list of doctors that are well versed in MM.  Dr. Scott and Dr. Steinberg are on the top of the list.  My second opinion doc did NOT know much about MM - in fact, I would have been his first MM patient.  NOT the choice for me.

Anyway, I ended up going to Dr. Scott in Boston (he's a pediatric neuro-surgeon who sees adults up to age 35).  My 2 surgeries were 12/29/03 and 1/5/04.

It is important that you are aware that MM is a progressive disease.  There is no reversal or cure - but the most effective way to treat MM is through surgery.  There is more to my story - but I think this post is long enough for now!

Please feel free to ask any questions.  We are all here to help and support you!  Good luck!

-Shari

Hi 808annie,

Shari gave you great advice up above.  You definitely need to make sure you see a MM specialist.  This is key to treatment of this disease.  Myself, I went to Dr. Steinberg in Palo Alto, CA, who is absolutely wonderful!  I highly recommend him.  But there are others on here that are equally as good.  Make sure you take a look at the list that Shari mentioned.

Just wanted to let you know that I know of myself and another on this board, Trina, that experienced panic attacks and anxiety attacks with MM.  In fact, after my surgeries, I did not experience anymore anxiety or panic attacks.  I would imagine that they have a lot to do with the lack of oxygen in the brain is my guess.  You just need to relax and get these surgeries as soon as you can. 

An angiogram is when they cut a very small place in your groin area (usually right side) and run a rubber tube with a camera on the end up your femoral artery to your brain.  It shows the arteries and vessels in the brain on both sides.  It probably sounds a whole lot worse than it really is.  You are pretty heavily sedated when they do it.  And they will give you breathing instructions while they look at your brain.  They will shoot a dye into the brain that helps make the vessels and arteries more visible.  Then afterwards, they will either give you an angioseal (cuts down the waiting time at the to about 2 hours) or make you lie flat for 6 hours.  I would definitely ask for the angio seal. 

If you have anymore questions, please let me know.

Michelle

Hi 808annie:

I'm Trina and Michelle is right.  I've learned that anxiety and panic is a common misdiagnosis.  I was diagnosed about 3 years ago with the anxiety, and after I had a surprising stroke this past January, I was diagnosed with MM (it's true many doctors don't know and I consider myself lucky that my first attending neurologist knocked it out of the park).  That being said, everything in the last 3 years made so much sense afterwards. 

PLEASE do your homework - you've definitely come to the right place.  I learned so much from the people on this site.  And be sure to keep your options open.  I originally had hoped to address my concerns on the east coast (I live in queens, NY).  But eventually, long story short and much homework, I am actually currently out at Stanford.  I had my two surgeries done with Dr. Steinberg and am now recovering.  I will be heading home next week.  I know everyone has to look at their options (insurance, how much can they afford, etc) but don't compromise your health.  There are options (free flights, financial need housing, etc) if you need them to get what you need to get done.  Also, once you have all your tests done, you can overnight them to Dr. Steinberg and he'll look at them without even meeting with you (they do a weekly case conference on films sent to them), so it's nice to have that extra opinion even if you don't meet with him.  It's what changed my mind about coming to the west coast. 

I hope this helps.  And keep smiling!  Know that you are headed in the direction for answers!

Trina

808annie wrote on May 17^th, 2005 at 5:37pm:

Hi Annie,

Welcome to our mm family. My niece, Mandy has mm, and she too was misdiagnosed for years, and was told, “it was her nerves” and MS. I found that many people with moyamoya disease have first been misdiagnosed with MS, and I too asked the question why? After some research, I think, it’s simply because of the lack of knowledge in the medical community about MM disease, because MM is easy to diagnose, IF only the doctor knew what to look for and ordered the proper tests, but many doctors just don’t know enough about it, so it’s just easier to diagnose MS first, because MS is better known and the symptoms of MS are vague and unpredictable, and different with each patient. (As it is with MM) Technically, there is a lack of knowledge about MS as well, especially when it comes to diagnosing it, because there is no single test available to identify or rule out MS.

For instance, if I were to have moyamoya, and presented a doctor with headaches, numbness, dizziness, etc. that comes and goes, they could also be symptoms of MS. So why not diagnose MS? … it fits, and no one even suspects MM disease. See what I mean? I asked my neurologist if he knew about mm, and he said, “yes, but it’s so rare” and brushed it off. There simply isn’t enough MM awareness to have a doctor consider MM right away, like they would MS. I hope that made sense. See, with MM, you may not have many symptoms other than a headache or Tia's. In my niece's case, she had little or no symptoms before her massive strokes.

Moyamoya is a narrowing of the arteries to your brain, so you don't get the proper blood flow your brain needs, but your brain grows mm vessels to try and supply your brain with the oxygen it needs. Those abnormal vessels, are "moyamoya" (Puff of smoke) on a angiogram. So this disease CAN be properly diagnosed, but then you need the proper approach of treatment for your individual case.

My best advice to you Annie, as the others here have mentioned, would be to read all you can about mm. Ask questions. Read, Read, Read! The more you learn, the less anxiety and stress on you, knowing you’re informed and on the right path with this rare disease. That’s why we all stress a mm specialist, because they deal with it on a daily basis, and know the results, if NOT approached properly for your individual case. We see too many reputable doctors that may have heard of MM, and can do the surgery, but they do NOT know enough about MM, the disease to make the decisions you need for a bright, stroke free future. It's always wise to consider a second opinion with a mm specialist. You can mail them a copy of your Angio, and get a second opinion over the phone if need be, to help you know if the doctor you have is on the correct path for you. Unfortunately, I don't know of any mm specialist in hawaii, but IMO, it's imperative that you seek a doctor with mm experience, not one just because they can do the surgery.

Please know we're here for you, and that you're in our thoughts and prayers every step of the way.

Mar