Hi Diane,

The way I understand it is, yes MM can be diagnosed with an MRI. It can give the initial indications of moyamoya disease. I read that, to diagnose MMD the MRI should show at least two flow voids on one side in the basal ganglia, they can be regarded as abnormal network and that would determine whether a MRA or Angio is required to actually see the abnormal vascular network and lead to a definitive diagnoses.

I personally think that in some cases it simply boils down to inexperience with MMD and not knowing what to look for, certain findings are characteristic of MMD, but many in the medical community do not know enough about this disease to diagnose it earlier. In our case, after Mandy’s MRI, we were told she had a mass on her brain and they had no idea what it was. Naturally her MMD was advanced after all the years of misdiagnosis and yet they still did not diagnose MMD, and within hours she had 4 devastating strokes. It was lack of knowledge in our case, but without a doubt, it should have been diagnosed on her MRI.

It also brings up the questions, at what stage of MMD does it show up on a MRI? I don't know.

Mar

HI Diane,

An MRI is the reason that they wanted to do the angio on me,  they said that my bloods vessels were inflamed and that I have new blood vessels that should not be there.  But they never told me that I had MMD. 

My first MRI and CT-Angio were done in the beginning of April and then I was supposedly sent to the top Dr. in Evanstan, IL to  have the angio done and there is when they said I had MMD that was the end of July.

The Dr. in evanstan said that I needed the surgery but no hurry, I could have another baby first and then have the surgery.  THANK GOD I found you guys and this website.  I would have waited and probably died having another child.  So long story short I think it can show up on an MRI.

Jeana

Hi Diane

I was dx from an MRI/MRA - an MRI a couple of months earlier had not given me anything either.
(I was 100%one side and 70% the other).

Just goes to show - things are consistent on both sides of the globe !

Helene

Diane, I feel your anguish,and bitterness, I got them same looks of disbeleif when Robert first went to the hospital (4 years ago) The Dr's who see me about 3 times a week and trust my judgement as a EMT looked at me as if I was a babbling fool and loaded him on dilatin and referred to a epilpesy specialist..........I then was asked by Roberts Primary care Dr and I will quote this "do you even know what a TIA is) The only thing that helped and actual made the final diagnois better was the fact that every symptom short of dibilataing stroke and death fit roberts symptoms............And i was able to say (at least under my breath.....I told you so...you babbling fool"....LOL) I hate to think were we would be right now had we not got that 3rd opinion from Dr. Chillag. God and many angels were smiling over Robert as we struggled through this, I like to think a few are still looking over him while others are looking over the many people still out there undiaggnoised.......Take care Happy Holidays
Mike

Hi Diane,

The answer is a MRI can show the signs of MM. However, in Kevin's case, he had a MRI that didn't show signs of MM. He already had a dissected right upper internal carotid artery and I don't know if they just blew it off (meaning the signs of MM) due to the dissested carotid artery or what. Kevin later showed the MM signs on MRI but again, I don't know if it was because that particular doctor recognized MM and the first did not or exactly what the deal was.

Kevin was originally misdiagnosed with FMD. When I contacted a FMD specialist he said "if your brother has FMD, he would be the first male ever to have FMD and I have studied FMD for 30 years". Great! (I'm being sarcastic) Ya think? At that point it was obvious Kevin had been misdiagnosed...once again. And the story goes on and on and on like this. Anyway, it wasn't until Kevin had a doppler that his family doctor suggested an angio. The angio was done. That doctor had no idea what it (MM) was and couldn't even describe what he was seeing so he took " lots of pictures" and in his words "sent Kevin home to live out whatever life he had left". Good God! At that point, I said to myself "somebody knows what this is" and I proceeded to search for answers with the help of Kevin's family doctor who I must mention is extremely intelligent and has been a God send to Kevin and he too assisted with the search to find out what it was. I think you can see the problem lies with whether or not the doctor is or is not familiar with MM and knows what to look for.

This is all history as you must know we found this site and it lead us to Dr. Steinberg and Kevin got taken care of in the nick of time as he was really bad off when I got him to Stanford. Thank God for Stanford and Dr. Steinberg and Teresa. It goes without saying, that had we not found Dr. Steinberg, Kevin would not be with us today. I also had to get a Congressman involved to get Kevin to Stanford due to his insurance. Lovely! (I'm being sarcastic again).

I feel your pain. I know what it is to go through the misdiagnosis and undiagnosed visits and just plain political nonsense. I spent 4 years, yes 4 years, getting Kevin taken care of. RIDICULOUS! I am still bitter about it because I feel in retrospect, much of Kevin's good years were taken from him and it could have been avoided. HOWEVER, Kevin is alive today and doing well for all he has endured and for that we are grateful. We know we are never promised tomorrow and every day is a gift but this misdiagnosis stuff is getting old. There are far too many people with MM for this continue. I also believe it depends on which part of the U.S. you come from as to whether or not one is diagnoses properly and in a reasonable amount of time.

Thanks for the opportunity to share and vent. lol!

Hugs,

Lore

Hi!!

April 25th, 2006, my son was 8-1/2 when he presented with numbness on the whole right side of his body and was unable to speak!  Only intermittantly.  Immediately we went to a "great" neurologist and he ordered an MRI the same day. Thank God the chief radiologist at our Children's Hospital of Wisconsin new what MM looked like. He immediately told our "great" neurologist and the reply I got from Dr. "Great" was come back in 2 months and we'll see if anything changes.  NOT!  I sent his scans overnight to Dr. Steinberg (got his name from DJ's wonderful website) and Teresa called me the next day and asked if we could be on a plane tomorrow, we left on May 10th and  Dr. Steinberg cleared his whole schedule to perform Kyle's first surgery on May 12th!!!  Can you believe it???  That's what bad shape my little guy was in!  So, we are proof that it is imperative that the radiologist and neurologist everywhere get the proper training about this disease!!!  It can mean life or death in many situations.  I believe it was Dr. Steinberg himself that told me a simple MRI will show MM. People with the disease are born with it.
Kyle's 6 month check up with Dr. S went so well. He told us Kyle's moyamoya vessels were decreasing!  That is much more than they had hoped for!
thank you everyone for reading this...my prayers are with all...and hope to meet some of you at the annual convention!
Renee