Desdemona,

Yes, I was first diagnosed with vasculitis and then later moyamoya.  

Vasculitis is the inflammation of blood vessels in your brain.  Vasculitis can be in any organ of your body (heart, lungs, etc.), but is more rare in the brain.  IMO, I'm not sure that with vasculitis you would have the moyamoya vessels (the vessels that appear as the "puff of smoke" on your MRI/MRA or angiogram scans).  This is what is a sure sign of moyamoya.  

The other big differentiation from what I've read is that vasculitis is more difficult to diagnose with a MRI/MRA and/or angiogram; whereas, with either of these tests in a moyamoya patient, it is easier to decipher that you have moyamoya disease because of the moyamoya vessels, i.e., "puff of smoke".  The only true test that someone has vasculitis is through a biopsy of the brain tissue and examing it under a microscope.  This test is used as a last resort.  

The similarity between MM and vasculitis are in the symptoms.  They can be headaches, behavioral disturbances, confusion, seizures, strokes, and TIA's....among others.  

Treatment of vasculitis differs from moyamoya.  With MM, the only treatment for the disease is through surgery (the kind depending on what a specialist feels is the best one for your case).  In vasculitis many cases do not require treatment depending on the severity.  Most physicians recommend cortisone-type medications (steroids), such as Prednisone, Prednisolone, or methylprednisolone (Medrol) as the initial treatment for vasculitis.  Some people with severe vasculitis or vasculitis that does not respond well to cortisone-type drugs will need to be treated with cytotoxic drugs. These medications kill the cells that cause inflammation in the blood vessels. The two most frequently used are azathioprine(Imuran) and cyclophosphamide (Cytoxan). They are usually used in combination with Prednisone and are often effective in treating vasculitis.

In answer to your question regarding whether you can have moyamoya on only one side of the brain....the answer is yes.  

I hope this has helped in some way.  If you have any other questions, please don't hesitate to ask.


Michelle

I was also diagnosed with vasculitis before it was determined I have MoyaMoya.  I was in a Tulsa hospital at the time.  They performed all kinds of test, and after I didn't respond to the steroids of cytoxan, they did an angiogram it just so happened that one of the people who read the films knew what MoyaMoya looked like.  I ended up going to the Mayo Clinic for a second opinion and then having surgeries on both sides.  I don't think it is actually that unusual when you are at a hospital that is not that familiar with MoyaMoya.  To many hospitals, it is a "text book case".

My son Michael has MoyaMoya only on his left side.  I am told that one-sided moyamoya is very very rare and that Michael's other side may develop moyamoya in the future.  Unfortunately, Michael's moyamoya surgery didn't work well so his brain is really being fed by just his right artery.  God forbid if anything should happen to his right artery.  Hang in there!

I agree with Roni.  I'm Native American and I have MM.  There was a thread on the site asking for the ethnicity (check spelling) of members on this site that had MM.  There were people from all walks of life. 

By the way, I was originally diagnosed with MS, then vasculitis, now MM.  Keep on knocking on doors until you get the answer you want.  Thank God for this site!
take care, Lee

desdemona wrote on Feb 24^th, 2006 at 7:37am:


Des,

You definitely want an accurate diagnosis before proceeding with treatment.  My sister was first diagnosed with cerebral vasculitis, for which she was treated with large doses of prednisone that nearly killed her and has done permanent neurological damage.  She had to change doctors and hospitals in order to get the correct diagnosis of moyamoya, and had two surgeries (one on either side of her head), which was definitely the correct treatment.  Meanwhile, she will always need to be treated for the damage done by the intense prednisone given for the incorrect diagnosis.  All they needed to do was the testing to reveal the "puff of smoke" to avoid all that agony.

Diane

My friend was also diagnosed with vasculitis first, then once we got to a bigger hospital, it was then dianosed as MM.

wow i'ts been awhile since going on this site. i had my surgery last march 2005 and was told i only have moya moya on one side. I ended up staying in the hospital for an extra couple of weeks (kaiser, redwood city) because they had no idea what would be the best solution for it. i found out they had to have several meetings with other doctors and finally decided that surgery was the case. i feel fine now,but sometimes i feel uneasy about having a stroke or if i find out somethings wrong with the other side. it's really important to check up with the doctor through the whole process b/c every bit of information helps.

When I first started having TIA's and they did an angio, I only had MM on 1 side, so they ruled it out completely (this was in 1989 and they though mm by definition was bilateral). Within 1 year, I started having problems with the other side and they diagnosed MM after annother angio. I was lucky that I didn't have a stroke while they were scratching their heads...

Sara