Hi, I have been quietly lurking as I have not been dx with MM.  I do however have a question that I hope you can shed some light on.  

I have read about the TIAs and seizures that some of you have experience and that they can sometimes be triggered by the weather or fatigue.  I started having what my family and I call "episodes" about three years ago.  I would wake up with funny breathing patterns, sweats, tingling on my entire left side especially my face and even my tongue.  I would be conscience but not able to hold a conversation due to confusion and fatigue.  My pupils would be different and I would be pale.  Now I have them at any time of day but I start out by getting chills and then my face becomes burning hot.  When the flush sensation wears off after about a minute, all color drains from my face.  I have this terrible pulling sensation on the left side of my mouth but never any distortion.  I look and feel dazed, confused and extremely sleepy.  

Is this a type of seizure or a TIA?  I have been told that they aren't and that they are just complicated migraines.  I do not have a headache with these though.  I sometimes have a headache the next day but nothing bad enough to take medicine for.  I am extremely fatigued after an episode and can sleep all day.  My muscles also visibly twitch and hurt the next day.  My vision is greatly affected which becomes normal later on.  

I can pretty much garrantee that I will have an episode it a storm is coming through.  It is so weird, I never watch the weather and never keep up with upcoming storms but you can bet my body does!  

Today's episode was brought on, I think, by having fun yesterday at a town festival.  I guess the heat and walking?

I have had MRI's out the wazoo, all being normal.  I have been checked for MS and everything else under the sun.  Would really appreciate your insight.  

Sorry this is so long.  Any help would be greatly appreciated.  

I can tell you that before I was dx with mm I was sent to have the mri and an mra.  It wasn't until my general practitioner sent me to meet with a neurologist that then in turn send me to have an angio gram, it was immediately after the angio that I had the moyamoya experts come to my room to tell me what I had and what kind of tests I should expect.

If you don't have a neurologist you need to get one.  If you already do then find out if they know anything about moyamoya.  If he/she doesn't then I would find someone else, keep asking until you do find someone that has dealt with moyamoya.

good luck, and keep in touch.  Sherry :)

dreamy wrote on Apr 29^th, 2007 at 7:50pm:

Is this a type of seizure or a TIA?

Hi dreamy,

I am not a doctor and I’m not saying that you did in fact experience a TIA, but IMO you definitely described symptoms of a TIA. Anytime someone experiences numbness, tingling or changes in sensation, speech difficulty, and vision problems, you are without a doubt describing symptoms of a TIA.

By definition, a TIA is a "mini-stroke" caused by temporary disturbance of blood supply to an area of the brain, which results in a sudden, brief decrease in brain function. But, if someone says a TIA is triggered by fatigue, weather, or having fun, perhaps what they really mean is, those things put them at risk for a TIA, but bottom line, there is a definite reason the blood supply to the brain is temporarily blocked, and there lies the danger. That blockage of the blood suppy to the brain is the problem and it's so very serious!

These episodes may be a sign of a serious problem that can lead to a permanent stroke if the problem isn't treated. Do not ignore these symptoms just because they resolve! Also, TIA's do not show lasting changes on CT or MRI scans, but you may still have an underlying problem and be at risk of a stroke. These episodes can be warnings, so my advice would be to seek a second opinion ASAP. There are other additional tests and procedures to evaluate the specific cause of your symptoms.

We see many people misdiagnosed and undiagnosed with MMD all the time and they too were told their MRI’s were normal. Unfortunately there is a huge lack of knowledge and understanding about this rare disease throughout the medical community, so many are in serious danger of a stroke. So my advice is always to get a second or even third opinion. You sometimes have to take a strong, proactive approach to get the answers you're comfortable with as to the cause of your symptoms.

Good Luck. You'll be in my thoughts and prayers.

Mar

IMO these are not episodes, they are TIA's.  I've seen them be any where from mild numbness to causing you to pass out entirely (not a fun ambulance ride).  I would highly recommend that you get to one of the doctors listed, or a reputable neurologist and request testing, MRI with contrast will show any significant strokes, and an angiogram to see what is going on with blood flow to your head.  My wife has experienced so many of the episodes that now she can tell just by how she feels in the morning whether or not she is going to have one.  Don't wait your health is not worth it.

Joe

Dreamy,
I am 47 and have MMD. I had an indirect bypass in 2000. Since pre school age I have suffered from chronic migraine headaches accompanied  by vision impairment, nausea, vomiting, bowel movements, slight shakes, funny taste in the mouth, and tingling and numbness. No one has attributed these to the MMD but it seems likley to me. I also had a very specific condition which I've read is a symptom of MMD. This is temporary paralyisis on one side following hyperventilation. In my case it was after blowing up a balloon or crying.  I would take the suggestions of others in this string and see a specialist. Hope it goes well with you.  
Russ

Thank you all for your replies.  I have since been scheduled for an MRI with and w/out contrast and an MRA.  We will see what happens!