Hi Everybody,

I have a friend in Cuba who is presenting with symptoms similar to tia's. However, they are just different enough as to make me unsure. I also know, though, that a lot of us presented with different symptoms. Could you tell me what was it that got you diagnosed?

The doctors in Cuba are baffled, and they don't have our technology so it's hard to run any kind of specialized tests. The goal is to get her here to the states to have tests run. I figured it wouldn't hurt to do some unofficial research in the meantime!

Thanks for all of your help!
Jesenia

Hi Jesenia,

As you probably know, the dangerous thing with this disease is that you may not have any real serious symptoms to warrant the proper tests to be diagnosed until after you stroke/hemorrhage, cuz if you’re getting just enough blood flow to the brain from your collaterals (MM vessels) you may not have any symptoms at all or you may only have symptoms such as headaches, fatigue, tingling/numbness, confusion or fogginess, especially when doing many things at a time, you’re easily distracted etc. This is all due to the body having such a hard time getting the blood around your brain, due to all the network of the new MM vessels. For those symptoms, many are not diagnosed until after a stroke or after the disease reaches an advanced stage with considerable blockage causing obvious symptoms such as TIA’s. Every case is different.

Research of any kind is outstanding. It saves lives, bless your heart for helping her, but my point is, your friend could still have MMD, and the danger and risks that go with it, without having any symptoms at all---to having many of the symptoms such as TIA’s. That is one of the reasons why this is a monster of a disease, it’s a silent killer. Your friend needs the proper diagnostic testing to be sure. I hope she gets it.

Mar

With Destin it was only headaches.  She never had anything else thankfully.  We thought she had a tia but it didn't show on her tests so it may have been anxiety or something else.  So like Mar said sometimes you don't get a lot of warning.

Donna

I know. Mine was diagnosed when my left side started going numb, but looking back there were subtle signs probably for a couple of years before that. By the time my right arm started going numb I was close to a catastrophic stroke according to the docs. A scary disease, indeed.

She is having what they are calling fainting spells, but I haven't talked to her myself so it just be that she's falling. She is often confused and the doctors over there just can't get a handle on what's wrong. They don't have the imaging equipment that we do here so it makes it that much harder.

As you may know, getting someone out of Cuba for any kind of reason is extremely difficult so we're hoping that news of a possible rare disease might grant an exception. It's a long shot, but it's worth the effort. The doctors over there have basically told her that she should go home and prepare for death. It is something she refuses to accept, lukily.

Thanks,
Jesenia

   My daughter's symptoms were very subtle at first. She was jsut very unsteady on her feet. My first thought wehn I brought her to the doc was that amybe she ahd an ear infection and it was affecting ehr balance. Within weeks she was bumping into things and almost falling out of her seat at school. She was diagnosed after I brought her to the ER becasue she wouldn't stand up and was crying. We were told she ahd 2 older small strokes we didn't even notice. About 6 weeks later she ahd a stroke and lost the use of ehr right arm for a while. Her most devestating stroke was aobut 6 weeks after that. she continues even 8 yrs later to struggle with the results of this stroke. Another symptom I see in hindsight is that she was most likelly waking up with a headache. We thought it was just her way of waking up but for for as long as we could remember she would wake up crying. I think the scariest thing is that no one can tell how fast this disease will progress. This is why it's so important to get help from a doc who deals wiht this disease daily. Best wishes to your friends I hope she can get to the US to see a specialist. Keep us posted....
Mary grace

I was diagnosed after a stroke. One symptom which is particular to MM is temporary paralysis or weakness following hyperventilation or heavy breathing. I would be paralyzed on my left side after blowing up a balloon or crying heavily as a child. My daughter had this symptom after practicing playing the flute. I am 50 now and this symptom stopped in my adolesent and adult years.  I also have chronic severe magrain headaches accompanied by visual patterns, nausea / vomitting, shakes, tingling in the arms and legs. Wishing you and your family the best.

hi my name is denise and I was diagnosed with mm in 01 and that was after my second tia and I still have headachs.  Does anyone know if mm has any underlying conditions with muscles and bones and joints. :-[

I had the bypass surgery on the left side in November 09.  My symptoms were numbness/paralysis down my right arm and sometimes down my right leg after coughing too much, exercising, laughing, etc.  Whenever I was hyperventilating.  Have not experienced it again since I had the surgery!

Holly was 8 when she started with "funny feelings" in her arm and around her nose and mouth, she had a couple of episodes where I thought she might of fainted but still unsure. 

my 6 year old grand daughter who is a mystery to the Doctors at Children's Hospital in Los Angeles and has been since birth. She had her first stroke at 11 months of age with out a diagnosis, she had her first seizure in June of 2008, second seizure in January of 2009 then nothing until last January when she had a mild/moderate stroke they did the MRI on the same day we were discharged then called us back a few weeks later to schedule the CT angiogram which confirmed moyamoya. From January till June she has continued to has seizures affecting the left side of her body. Meds have been increased gradually every time. But something new has also developed she now periodically sees the color white as gray then it goes back to being white. The Dr. has learned that the mid line area where the problems are also the area where the "Thalamus" gets its blood supply. My point being I don't think there is any set symptoms for this disease. The best answers are found in the MRA / CT angiograms. Best of luck and GOD bless.
Kimber
California