Hi,
This is my first message on the site.  I was dx'd with atypical mm on 4/27/04.  My mca on the right side is totally occluded.  I have been to Col. Presb. in NYC and Stanford for testing.  I have good blood flow in the normal state and flow is good when compromised with co2, or zeon gas.  Surgery has been an option, but not strongly recommended at this time.

Within the last two months, I seem to have become more symptomatic.  My neurologists have said these symptoms are "non classical".  I am wondering how many others have experienced the same symptoms, and were they before a stroke, and if so, how long before?  

Specifically, I will get a sudden lightheadedness that then effects my entire body with a slight nausea, sometimes chills.  This is followed by a headache for 3-14 days, and then the headache will just dissapear, usally upon awaking in the morning.  The headache is not unbearable, just gives me a very heavy head type of feeling.  My vision is not impacted directly, but I feel my eyes are strained.  When I have a headache, my tracking things from side to side is horrible, and I find myself subconsciously adjusting what I focus my vision on.  I will also have weightlessness in both arms and legs when I go to sleep.  In the mornings I will sometimes experience numbness in my left thumb and trigger finger and sometimes these fingers are more purple than the others.  This seems to go away once I get up and moving.  I have only had one episode where I was reading the paper and although I did not pass out, I did have a total "disconnect".  That is, I felt like I couldn't read or process any information with my head.  This lasted for about 2 seconds and the headache that followed was bad and long.  Also, my neck on the left back side seems strained/stiff when I have symptoms.  

I have had numerous tests... eye, stress, ekgs etc to rule out other problems, and all have been negative.

Any of these symptoms sound familiar?  I am concerned that I am heading toward a stroke.  Were these warning signs for anyone out there?

Thanks,
Mel   :)    

Mel,

[smiley=hiya.gif] and welcome to our MM family.  I'm glad you have found us and we will try to help in any way that we can.

These are the questions I would ask.  How long ago were you tested with Dr. Steinberg?  What was Dr. Steinberg's recommendation to you at the time?  If Dr. Steinberg opted for surgery at the time, then I would say that you should have surgery.  And if it's been awhile since you've had testing, then I would say it's probably time to have testing again.  This is my opinion though.  

Your symptoms sound familiar though.  Some of them that you described are exact ones that I had before I had surgeries.  I always felt like the floor was going to swallow me up and I was going to faint.  I definitely had weightlessness in my legs.  Since surgeries, I have not had this feeling anymore.  When I first started showing symptoms, I had the same tests done....EKG's, stress tests, echocardiogram, holter monitors, and eye tests and all showed no problems.  

Like I said before, IMO, I would have tests rerun with Dr. Steinberg or a MM specialist if they were done awhile back.  I'm sure your pasts tests with Dr. Steinberg are still on file at Stanford and they would be able to tell if anything has progressed.

Let me know what you decide to do and I will keep you and you family in my thoughts and prayers.

Michelle

Hi Michelle,

Thanks for the response.  I saw Dr. Steinberg in Oct 95 and had a zeon test done.  He recommended not having surgery at that time as I had good blood flow.  He did recommend further testing if I was symptomatic or at the 1 year interval.  

What type of side effects do you experience after the surgery?  Did it improve your quality of life?

Mel

Hi Mel, Welcome to our MM family! [smiley=wave.gif]

I’m sorry to hear you have to deal with the many alarming symptoms you've described, God love ya, but MM symptoms vary with each person because of the many individual factors involved, but all are of concern and that's where a MM specialist is so very important!

Many doctors have different approaches to the treatment of MMD, and it’s crucial that you find the best approach for your particular case. From the many cases I’ve seen here on the website over the years, it’s seems to me that Col. Pres. hospital has a very conservative approach towards the treatment of MMD.

I think you're wise to be concerned that your symptoms may be possible warnings of a pending stroke. The only sign/symptom my niece had a month before her 4 major strokes were, she couldn’t hold a pen to write her name. I realize that no two cases are alike, but I’m saying… your symptoms could possibly be of concern.

I am not a doctor, but I’ve learnt that you can have good blood flow on the tests and still suffer a stroke with MMD. The collateral vessels (MM vessels) are helping to supply blood to the brain, but these MM vessels are abnormal and weak vessels and they can possibly rupture and cause a stroke. I don’t mean to frighten you, but you said your right MCA is totally occluded, and the facts as I know them are… MMD is progressive and the MM vessels can only work for so long supplying the proper blood flow before you need treatment to avoid that possible stroke.  

My advice is to contact a MM specialist ASAP (like Dr. Steinberg)who may want to reevaluate. He has the experience and will know if these are symptoms that need to be addressed.

You're in my thoughts and prayers. Please keep us posted.

Mar

Mel,
                 Did you have the testing at 1 year intervals are have you not been tested since 95? You absolutley need to see someone ASAP. They are symptoms you are having like Mar said everyones are different but I'm sure you realize something is going wrong. You need to address this before you have a severe stroke like my daughter did and have to rehab back for years, that too is an individual thing as far as the time frame but trust me you don't want to go there. PLEASE call Dr. Steinberg or Dr. Scotts office immediatlely, it is a very progessive disease and time unfortunately isn't usually on our side with MMD. I don't mean to scare you I just want you to know how important it is to not put this off.
Hope everything works out and we're here for you for any questions or support you need. My thoughts and prayers are with you.
                                            Nancy