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Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 12/20/2006 10:19 AM (GMT -7)   
First I would like to thank you!  I am so lost and its nice to know there are people like you out there that care enough to listen to a stranger and also respond! Sometimes I don't even get this kind of attention from my doctors! I have had doctors tell me that my symptoms were like ms, migraine, seizures. I'd like to tell you my story which all started January of 2006. Prior to that I was perfectly healthy, absolutely no symptoms!
It started with headaches. The headaches were on and off. Mostly on my left temple. They were dull, aching. Not as painful as a migraine. Then I started developing these sparkly, firefly looking things in my vision. Both eyes. They move around fast and are silvery/white. 24/7. I only really notice them against plain backrounds like the sky or a wall. So the headaches on and off. But the vision all day.
Then there were times during the day where I would get lightheaded and dizzy. Almost like a sinking feeling or tilting sensation.  I told my doctor and she did a mri, cat scan and eeg. Mri and cat scan normal but eeg abnormal. I've seen lots of neurologists, and even an epileptologist who say abnormal eeg, but nonspecific, not seizure disorder. One neurologist tried me on Lamictal (anti-seizure) but it made me feel worse. They took me off and I began devoloping this Palinopsia (afterimages and trails) For example, I look at something, look away, and its stuck in my eye. Or someone walks but and I get a trail, like a ghostly image. Mostly seen in the dark and something light goes by. This is worse at night, especially when I am driving. If I sit at a red light and move my eyes up and down I get a trail of the red light.
I went back to my doctor who said this was migraine aura and sometimes seen in patients with a hole in the heart. So they did the echo and bubble study which showed evidence of a hole. I am still waiting to hear if this is whats causing all of my problems. Through all of this, alot of doctors say that I describe visual phenomena seen in ms patients. When you say mri of spine. Is that like a spinal tap? I've never had numbness/tingling. do you have any ideas? I understand that your not a doctor but I would appreciate your thoughts!

els
Veteran Member


Date Joined Oct 2005
Total Posts : 4031
   Posted 12/21/2006 6:55 AM (GMT -7)   
I can relate to alot of what you describe.  I had terrible headaches for years before I was diagnosed with MS.  I cant drive at night anymore now because my vision is just too bad and I feel that I see things that just are not right...if that makes any sense?  A spinal tap is completely differant from a spinal MRI.  When they do a MRI of your brain they can do it of your c-spine which is the base of your neck and also all the way down your back which is your spine...it takes a few hours to do but there are many people with MS that only have lesions on their spine or spinal cord actually.  A spinal tap is terrible to go through and I have only had it done once.  It is where they take fluid from your spinal cord to test for MS or other disorders. 
My diagnosis was very fast it took 6 weeks but my doctor was coming at it like I had a tumor.  Some people who dont present drastic symptoms can take years to diagnose.  There is alot of things you have listed that do sound like MS but there are also alot of there disorders that MS mimics too.  I guess that is what makes it so difficult...I dont know.

Elisha
Co~Mod: Depression
Moderator: Heart & Cardiovascular Disease
http://www.healingwell.com/donate


Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 12/28/2006 12:58 PM (GMT -7)   
Thanks Elisha....so you have a heart condition and ms?????

els
Veteran Member


Date Joined Oct 2005
Total Posts : 4031
   Posted 12/29/2006 3:29 AM (GMT -7)   
Yep and Multiple System Atrophy...that's a lot isnt it? eyes

Elisha
Co~Mod: Depression
Moderator: Heart & Cardiovascular Disease
http://www.healingwell.com/donate


Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 12/29/2006 11:03 AM (GMT -7)   
Oh my gosh....but what is that...multiple system atrophy?

els
Veteran Member


Date Joined Oct 2005
Total Posts : 4031
   Posted 1/1/2007 9:12 AM (GMT -7)   
It is pretty rare, it is almost like a parkinson's diease but not.  It effects heart, blood pressure, eye sight, muscles. 

Elisha
Co~Mod: Depression
Moderator: Heart & Cardiovascular Disease
http://www.healingwell.com/donate


Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 1/1/2007 9:26 AM (GMT -7)   
Els....sorry to be asking so many questions...but, how did they find out you had that. I mean, was there a specific test like an mri?

DREAMGIRL
Veteran Member


Date Joined Jan 2006
Total Posts : 600
   Posted 1/1/2007 10:55 AM (GMT -7)   
hi nuerogirl,, isn't Els the best, she has been on this site a long time and is so helpful.  unfortunately, i do not have your symptoms, just wanted to say how scary it must be. i know when i went friom healthy to heart patient overnite i was pretty anxiety ridden  so hang tuff and know you do have others here that know a lot  , and we all want to be supportive in one way or another.

els
Veteran Member


Date Joined Oct 2005
Total Posts : 4031
   Posted 1/2/2007 5:43 PM (GMT -7)   

Nope, no MRI I have a pacemaker for bradycardia which this diease has caused.  There isnt any one specific test to say you have this just a bunch of tests to rule it in.  I had to see a special neurologist called a Movement Disorder Specialist who did a bunch of blood work, had MRI's from before my pacer (I do have MS and have had MRI done many times prior) and a tilt table test which is a nasty test but for those of us who have unstable blood pressure problems this test picks it up.  I do know they can do PET Scans but I wasnt able to do that one either.  The MSA lowered my heart rate and blood pressure to drastic levels.  It's pretty wierd. 


Elisha
Co~Mod: Depression
Moderator: Heart & Cardiovascular Disease
http://www.healingwell.com/donate


hope3
Regular Member


Date Joined Feb 2006
Total Posts : 216
   Posted 1/2/2007 8:48 PM (GMT -7)   
Hi nuerogirl! I don't know anything about what you have, but I do have coronary artery disease. I hope the Drs. can find out soon what is causing you so much pain. It's very scary to have anything that effects your heart. I wish you all the luck. Like dreamgirl and yourself I went from being healthy to a sudden heart attack. We will be here to give you support and to listen to any fears you may have. I think that helps alot. Let us know what the Drs. find out please. Take Care!


I agree with dreamgirl els is the best!
 


els
Veteran Member


Date Joined Oct 2005
Total Posts : 4031
   Posted 1/3/2007 10:17 AM (GMT -7)   
You guys are too sweet <blushing> :-)   Thank you!  Your the best group on the forum you know... tongue

Elisha
Co~Mod: Depression
Moderator: Heart & Cardiovascular Disease
http://www.healingwell.com/donate


Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 1/4/2007 10:03 AM (GMT -7)   
You guys are the best...what would I do without all of you. Hope...I'm so sorry that you have this disease, what were/are your symptoms with coronary artery disease???

Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 1/4/2007 10:05 AM (GMT -7)   
Els...when your heart rate and blood pressure was low...how low was it?? Also, with the ms, did you originally have findings on your mri??

els
Veteran Member


Date Joined Oct 2005
Total Posts : 4031
   Posted 1/5/2007 8:30 AM (GMT -7)   

My MS was diagnosed first.  It will be 6 years this comming September.  Originally, my symptoms were totally numbness on my right side which came on over night basically.  I did have an MRI done which was the first test my PCP ordered and they found a 3x3 cm lesion in my brain.  A regular or normal MS lesion is usually the size of a pen point...so I was sent to a neurologist who then referred me to a neurosurgon for a biopsy as they were looking at the lesion as a tumor.  However, pathology on it came back as MS.

My heart rate before the pacemaker was in the 20's for about two weeks before they implanted it.  This kinda of came on all at once too...I woke up one day and everything was blurry, and I was very dizzy.  I ended up passing out in my living room floor before getting ready for work.  My mom was to come over that morning to pick up my cat to take to the vet...very lucky indeed as she found me on the floor.  That was last year.

I still have problems with my blood pressure dropping which I cant regulate too well.  The medications I take for it helps greatly but the diease sometimes gets the better of me.  And if I am around anyone who is sick or if I do too much then it tends to drop.  The lowest it has been is 50's/30's ...but it normally doesnt get that low it will go 70's/50's and I am still passing out when I stand up due to not enough blood flow to my brain.  It really sucks.


Elisha
Co~Mod: Depression
Moderator: Heart & Cardiovascular Disease
http://www.healingwell.com/donate

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