Has anyone been told they have vasculitis and later moyamoya? How are the two differentiated?  

Does anyone have moyamoya on only one side of the brain?
Thanks
d

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.

[smiley=hug.gif]
Michelle

I was told it was something esle but they didn't name it. Then at the Mayo they said I had thin vessiles on the  hemispher I had my stroke but not on the other. as far as they could tell right now. So I was labeded as a One Sided MM for the surgery to get more blood flow to the side of that had the stroke. They determined that by giving me a "stress" test. They injected me with something that gave me a controled heartatack they said. It only lasted for a mineut. So they could see if I was getting enough oxygen to that side of my brain i guess not because they scedualed the surgery right away after i was off cumidan.
I hope that helps. There I times where I feel like I don't belong here because I have it only on one side and my stroke was suvere but I am in cologe and working fulltime and fully functioning.
Sorry I am rambling agian.
Becky

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 stroke was first diagnosed as a clot related one but then 6 monts later after an angiogram done at Abbot hospital in MN read by a Nuroradiologest who I guess has seen MM before said No Way. I had a watershead claped vessel not a clot stroke and those "new growths" are too developed to be that new it looks like MM he said. Then when I want to talk to the nurologest i was seeing at the time, she said I wasn't asian so I can't possibly have mm. But I prosisted to have another opionin ans was sent to Mayo. That nurologest said Mayo would tell me I couldn't have mm eather beacues I wasn't asian. Well I am here now and with a diferent nurologest.

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!

Don't let anyone tell you MM is limited to Asians!!!  Simply NOT true.  To date, Asians may have a higher incidence of MM, but it could also be because the Japanese picked up on it earlier than anyone else.  Won't be surprised to eventually learn that non-Asians have a similar incidence of MM - once neurologists and neurosurgeons gain more experience with MM.
Best,
Roni

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

I am now with a great nurologet who knows that MM is not limeted to heridity. He believes it is  a mutation in our bodys for what ever reason started, but there hasn't been enough tesing to determin the exact caues. He keeps a cloes eye on my other side, as well as my brother who now has developed migrains to see if he is a late MM bloomer as well. So far so good for my bro but each of us get yearly Angios or CTs. It is amazing on how narow minded some docs are. The interal doc I went to see when I had my stroke before I knew it was on said I was way to young to have a stroke at 22. Well wasn't she full of it. We got a second opion right there and that person said go to the hospital imedietly. My stroke was major but I recovered quickly but still had some major signs like mussle weekness,  but my facial poralisis was extreemly mild, but my speach was some waht surled. I just sounded like I was drunk.  I guess we have all had our hoops we had to jump through to get here. I am happy I now have a great nurologest who has an open/Educated mind
Becky

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

Has anyone been told they have vasculitis and later moyamoya? How are the two differentiated?   Does anyone have moyamoya on only one side of the brain? Thanks d

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

A couple of other points, after reading the entire thread so far:

1. My sister is caucasian.
2. Lots of the people here are parents of young children where the child is actually the person with moyamoya.  so being 22 has nothing to do with it.

Hang in there.

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

I have MM on one side only.  I was told that only 3% of this rare disease is only on one side.

I am 1/2 hispanic and 1/2 anglo - adopted at birth, but have met my anglo birth mother.  No history of 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.

Hi,

I was dx'd with atypical moya moya.  My puff is on the right side only, my mca is totally occluded, and my carotids for now appear normal.  

I am symptomatic but have not had a stroke.  

Mark

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