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Neurogurl
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Date Joined Dec 2006
Total Posts : 373
   Posted 9/12/2007 7:18 PM (GMT -6)   
Hello, does anyone here have MS and suffer from palinopsia (vision trails) and/or sparkly vision.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3521
   Posted 9/13/2007 5:43 PM (GMT -6)   

Hey Neurogurl,

I am sorry.  I have never even hear of this.  I looked it up and I see that it can be caused by both inflammation of the optic nerve or a cerebellar lesion.  I have never had this.  It sounds quite disturbing.  Do you have this?  What does your doctor say about it?  I am sorry this is not a very helpful post but I wanted to offer my support.

love and prayers,

 

 



Gretchen
diagnosed: MS  July 2006
 
A person without a sense of humor is like a wagon without springs.  It's jolted by every pebble on the road.
Henry Beecher
 


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 9/13/2007 8:30 PM (GMT -6)   
Hey Neurogurl

Good to see u again! I hope u'r just inquiring about this pob and not experiencing it, but i suspect u are experiencing it. I'm not familiar with it by the proper term, but do know what u mean. I did a bit of searching for info and below is what i found. I hope this helps and that u'r not dealing with this now. Please let us know how u are and if this is a prob, how it is treated for u. Take care friend.

http://en.wikipedia.org/wiki/Palinopsia
http://dictionary.reference.com/browse/palinopsia
http://archopht.ama-assn.org/cgi/content/abstract/108/3/399
http://www.medilexicon.com/medicaldictionary.php?t=64533


rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 9/13/2007 9:02 PM (GMT -6)   
Hi guys,

I still have no diagnosis. And I suffer from visual disturbances. Palinopsia, which causes trailing vision. Im hoping to hear your personal MS stories to see if I my symptoms are anything like yours. Gretchen, thank you for the information you have given me about this problem. Could you tell me what website you went to. My doctors pretty much say that they dont know the exact cause right now.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3521
   Posted 9/13/2007 9:26 PM (GMT -6)   

Hey Neurogurl,

Um I just googled palinopsia and that is what I came up with.  It is also associated with LSD abuse lol.  I am just assuming that you are not doing that.

My first symptom was vertigo and it got progressively worse until about 3 weeks later I finally went to the hospital.  At this point I was wall walking.  I was admitted for a couple of days.  They did a bunch of tests and found a brain lesion.  They said "stroke" and sent me home.  4 Weeks later I had a severe recurrance of symptoms and went back to the hospital thinking another stroke.  They did another MRI and found a new lesion.  They said "ooooops not a stroke".  I had a spinal tap with the classic O bands and was off to UCLA MS center.  A few more tests and MS was the dx.  It was really straight forward for me.  I had three lesions, O bands and lots of symptoms.  So I had two flares like 4 weeks apart and then another 10 months later.

This seems like a boring and often told story lol.  If you want more info. you can always e-mail me. I hope you got what you were looking for.  I am not sure how helpful it is to hear other's stories since this disease is so variable.  Good luck.

love and prayers,

 


Gretchen
diagnosed: MS  July 2006
 
A person without a sense of humor is like a wagon without springs.  It's jolted by every pebble on the road.
Henry Beecher
 


Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 9/14/2007 8:28 AM (GMT -6)   
Hi Gretchen,
 
This actually was very helpful..and I thank you. I definately don't use illicit drugs haha. So for you it was only a couple on months before you get a diagnosis huh. Im curious to know if there is anyone out there who has ms but it took doctor's more than 2 years to figure it out. Do you know any cases like this or anyone out there reading this that this has happened to?

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 9/14/2007 10:55 AM (GMT -6)   

Hey Neurogurl

I"m sure others will be along soon to give u their stories, but i wanted to jump in here and let u know that there are MANY who've gone two years and much longer before getting a dx of ms. Unfortunately a quick dx is not the norm for ms...rather a journey of time waiting and watching.

 


rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 9/14/2007 1:26 PM (GMT -6)   
Rhonda...do you know if its possible that someone goes two years with symptoms and no lesions...and then 2 or 3 years later they start developing one lesion?

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 9/14/2007 2:29 PM (GMT -6)   
Hey Neurogurl

As i understand it u could have a lesion and it not show up on mri OR 'heal' before or between mri's so as not to be caught. As far as symptoms and no lesions...well i have and have had symptoms for over a year now...tho mine are MUCH better...and not one lesion. Now...that may mean just no ms or just no lesions from ms showing up. As usual, ms is varied and erratic in the ways it shows it'self. No real path u can count on. As for me, i've had 'things' going on as far back as 5 years i think and no lesions. I"m not dx'd and an doing great...so that may mean no ms (as of right now i DON"T have ms) or it may mean if i have another big episode a lesion may show. See? No blueprint to ms at all. I"m sorry...this is no help to u at all, but there just isn't a way to know for sure. I think that YES, it's possible for someone to have symptoms before...long before...a lesion shows up on mri, but again, there is the possibility that lesion(s) were there and just weren't caught in the past. I hope that others will be along soon to help more on this question. I know i've just muddied the water for u.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 9/14/2007 3:24 PM (GMT -6)   
As always, thank you Rhonda...I just hope the doctors will soon find out whats wrong with me because Im not sure how much more I can take of this...its taken away from the quality of my life. :(

kimmerz
New Member


Date Joined Sep 2007
Total Posts : 10
   Posted 9/16/2007 11:48 AM (GMT -6)   
I am going on 6 or 7 years now. Lesions, just not quite large enough, then next MRI normal appearing brain. It is frustrating to have the symptoms with no dx. Hang in there, don't give up.
 
As far as my eyes, I do get really bad "floaters" that will make my vision go black, but this only lasts for a few minutes.

Kimmers

Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 9/17/2007 9:05 AM (GMT -6)   
Thank you Kimmers...I also get sore pains on the top of my head....does anyone else get this?

LadyEMT
Regular Member


Date Joined Feb 2006
Total Posts : 109
   Posted 9/20/2007 3:59 PM (GMT -6)   
I hope I'm not interupting..... But talking about visual disturbances, I will be driving along and when ever I come to a stop it looks like the road keeps moving.... I know I have come to a complete stop but......any how also does it when I am walking... I do have other visual disturbances but this one freeks me out....just being the peanut gallery....

Good luck Neurogirl
Life Can Be A Challenge.... 
 Expect The Un-expected....
Live Everyday As If It Were Your Last.


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 9/20/2007 7:17 PM (GMT -6)   
Hey Bonnie!!

GOOD to see u!!! U'r not alone on this one friend. I get this too. I am sitting still in traffic and it feels like i'm still moving...rather that the cars maybe are moving around me?? Make sense? Same thing in crowds. Too many moving in various directions in small spaces just messes with me! Chaotic! I have vertical stripes on my kitchen walls and if i stand and look at them (we have peg boards on the walls and when i look at them i'm looking up) i will get dizzy. It's like i lose my sense of placement and have to hold onto the wall as i look at the board. I suppose these things will stay...doesn't seem they are any better overall. Best wishes to u. Seems we may be just stuck with some things. :(
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


littlechina
Regular Member


Date Joined Jan 2007
Total Posts : 97
   Posted 9/23/2007 12:24 AM (GMT -6)   
Neurogirl~

I feel your pain! It took me almost a year and a half to get a diagnosis. I understand completely what you mean about it affecting your quality of life. So many scary and sometimes debilitating things were happening to my body; the waiting and the limbo and the "I don't know"s were agony and it was so hard to function sometimes. While I don't know specifically what you have been experiencing, I can relate with what you must be feeling and I am sorry you are going through this.

The best thing I could tell you is to make sure you have a good support team and try to keep a positive attitude. It's hard sometimes, but it really does go a long way. You will find answers. We're all here for ya.

~Niki

sgdehart
New Member


Date Joined Oct 2007
Total Posts : 1
   Posted 10/11/2007 12:04 PM (GMT -6)   
Neurogirl, I have palinopsia too. This was the first thing I noticed and told the ophthalmologist. He said that was not normal and referred for an MRI which showed lesions on my brain. I am not sure if any are on my visual pathways, but I bet they are. I'll have to ask the doctor. The doctors think I may have MS, but insist I get a spinal tap... Anyways, have you had an MRI? Wasn't sure from reading your posts. I'm curious to know how long you've had this, how old you are, and I assume you're female:) I'm a 29 year old white female and have been experiencing this for about 2 years now. It's hard to tell though. I'm also wondering if this is your only symptom, as it is mine, that I can tell anyways.

THANKS!

sunshine_2165
New Member


Date Joined Aug 2007
Total Posts : 11
   Posted 10/11/2007 8:04 PM (GMT -6)   
hi i have had ms symptoms for at least 2.5 years and yes i was just dx in aug of this year. i pretty much told them i had ms and convinced them to give me a mri.
 
sunshine

Marie-Claire
Veteran Member


Date Joined Mar 2007
Total Posts : 900
   Posted 10/13/2007 5:19 AM (GMT -6)   
I had suspicious neuro "attack" 4 years ago which left me unable to walk or raise my arms, severe vertigo,pins and needles everytime I bent my head, numbness on both right side of my legs. It took almost 3 months to "recover". I am left with having to walk with one or two crutches for short distances...and a using a scooter for errands etc. The vertigo and muscle weakness comes and goes...lasts a few weeks at a time and then relents, ...I have "recovered" but have been left with some disabilities. After a series of tests, my neuro has called this "probable MS' .....we are waiting for another major attack.In the meantime my symptoms wax and wane but have never been as dramatic as 4 years ago. I too am very sensitive to hot weather, hot baths or showers etc. I experience the extreme fatigue which leaves me almost unable to control my scooter or even think....around 3 or 4 oclock everyday....my whole body gives out...I have a hard time holding my torso up.
So I understand what being in limbo is all about. I also suffer from crohns disease which took 13 years to finally diagnose.
I guess when we get frustrated we just have to remember that none of this is normal. We know our bodies better than anyone....and these symptoms don't just show up out of nowhere or for no reason. Patience is the key.
My mother used to tell me never to pray for patience....because God would send me too many opportunities to practice!!LOL.
You are not alone....and this forum is so good to vent, ask questions and just "be" with people who understand!
Thank you HEaling WEll.
Love and prayers
Mary
50 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.
 
 


Cathead
New Member


Date Joined May 2007
Total Posts : 6
   Posted 11/11/2007 12:16 AM (GMT -6)   
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Post Edited By Moderator (Kimber) : 11/11/2007 11:29:48 AM (GMT-7)


Rightway
Regular Member


Date Joined Sep 2007
Total Posts : 24
   Posted 11/19/2007 4:58 PM (GMT -6)   
Neurogurl,
You might be talking about what is sometimes called Ocular migraines. Google it. I have that and have had it off and on every since I believe I have had MS. I didnt know it at the time it started 9 yrs ago, but since I was DX in Aug 96, I can look back to see how the visual problems may have been a sign and I just didnt know it at the time. I get these OM's maybe one every few months, depends. Most doctors and web sites say they are harmless, but they may not be connected them to MS either. I think there might be a connection to MS.
Rightway

map lady
Regular Member


Date Joined Feb 2008
Total Posts : 154
   Posted 5/1/2008 1:59 PM (GMT -6)   

Wow!!  Sorry to dig this up if resurrecting an old topic is frowned upon, but I have this problem with looking at striped objects too!  Or things with spots, or things with textures, it's pretty unpleasant.  Sometimes it's so bad I can't even be in a room where I'm not next to the wall, all the objects in the room will look like they are moving since it's like my eyes can't understand that they are at different distances but are staying still.

Anyways, I thought it was fascinating that it could possibly be MS.  Last January I suddenly got horrible vertigo and they rushed me off to have an MRI thinking that I had a brain tumor or MS.  The MRI was normal and they didn't figure out what was wrong, and the vertigo isn't too bad most of the time now that it's been a year, but apparently the MRI looking ok doesn't necessarily mean I do not have MS.

I noticed the posts lamenting that sometimes even when you have MS it won't show up on an MRI, and noticed about a spinal tap being an MS test?  How reliable is that?  I know you can get all sorts of bad problems if they do the spinal tap wrong, but if it's pretty reliable for determining whether or not you have MS, I would be totally willing to go get one!

I am concerned that my vision and balance problems and so on might be from an old head injury if not from MS, so that complicates things.  Anyways, any suggestions on what kind of doctor I could see or what tests I could do, that would be super :)  I know it sounds weird to be excited about possibly having MS, I know it is not something to actually enjoy having, but I just want to know what's wrong with me!!!  I already have a couple other fun permanent diseases to deal with so I'm kind of used to having things in me be broken :P


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3521
   Posted 5/1/2008 4:55 PM (GMT -6)   

Noooooooo I wouldn't be too excited about MS!!  If you still have concerns that you have MS, then you need to see a neurologist.  There are many, many other diseases that mimic MS.  MS is relatively rare.  There is no one test that diagnosis MS.  The lumbar puncture can be helpful but again you can have a clean lumbar puncture and still have MS.  The lumbar puncture can identify many health problems.  Evoked potentials is another test that many neurologists look at.   Thorough blood work is also important to rule out other infectious or metabolic problems that mimic MS. A neurologist will also do an exam to see if you have reflexes or other reponses that may indicate MS.  If you have or are still experiencing visual problems then you may want to have an opthalmologist examine your optic nerve. 

It seems reasonable that an old head injury could cause these symptoms as well.  Well, good luck on your quest for answers.  I see that you are a regular member here.  Welcome to the MS board.  You are welcome here.  Please ask any question you may have.  We also chat Monday afternoon/evening.

Love and prayers,


Gretchen       co-moderator MS board       diagnosed with MS July 2006


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 5/2/2008 6:13 AM (GMT -6)   
Wow, there's a wealth of experiences in this post and I appreciate everyone's input! 
 
I can't say I experience this actual effect but I do have ON and the problem I have is that the right eye perceives motion on it's peripheal edges when it's inflamed when nothings moving... it's a little freaky but I've learned to turn my head directly to the motion to be sure if it is or isn't moving anymore as I don't trust the right side judgement when I know it's acting up.
 
I really appreciate the "occular migraine" note... that seems to be the brunt of my migraines and usually precedes a bout with the ON.
 
As for the limbo, I think it's a welcome to MS from what I've learned so far... I've been on this merry-go-round for almost 12 yrs now and it's only been since the symptoms became severe enough to notice that the drs finally sent me to a neuro who immediately dx'd MS but the MRI didn't show lesions so then he spent the next 18mos trying to disprove it only to have the ON show up and finally he dx'd MS ... but I suspect I'm still not showing lesions on the MRI's.  So as Uppity often points out, MRI's aren't perfect... Lesion's often hide very well and lots of factors can mess with the tests. It's a total symptom package from a multitude of areas in the body and that's what my neuro is going by now.
 
I've found great info here, great experiences shared and lot of reassurance so that it doesn't feel so doggone "weird" anymore going thru this.... makes dealing with it more hopeful!
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


map lady
Regular Member


Date Joined Feb 2008
Total Posts : 154
   Posted 5/2/2008 11:47 AM (GMT -6)   

Thank you!  All of that information helped a lot, and I certainly will be off to see the neurologist.

I just have one more question about having my optic nerve checked - how do they do that?  I have been to see the optho guy recently, I have been to opthos before for other normal eye exams and unfortunately the optho guy from my health group has stone-age technology for everything.  Little piece of paper with lines on it to check and see if your vision is showing crooked lines...based on "do the lines look crooked?" and you answering yes or no, reading the eye chart, and using the eye drops to dialate the pupils and then looking in the eye with some sort of hand-held light gizmo on a stick.  That's it!!  Even Lenscrafters had more advanced screening equipment!  LOL.

Anyways the optho said I have something wrong with my pupils where they're always dialated really large and gave me some eye drops.  He said there is nothing else to do since my pupils react to having bright lights shined on them.  Granted, no other optho had bothered to care about that, or mention it, perhaps they thought I was using illegal drugs, but I am not sure he did anything that can check for optic nerve problems and the eye drops he gave me only help with my extreme light sensitivity and dancing white spots I see from being in brightly lit areas.  I sure would like to get my optic nerve checked but I don't know what to tell him to use, or even if he would possess equipment to do that.

I certainly didn't mean to make light of all the unfortunate effects of MS, but I seriously do get excited about figuring out what is causing a lot of the problems I have.  Even if it means I have another incurable disease with bad side effects.  I already have 3 other autoimmune disorders (Crohn's, asthma, eczema) so it's not entirely far-fetched to guess that I could possibly also have MS from my malfunctioning immune system.  I just like knowing what's wrong with me so I can try to anticipate any problems that may develop, and especially so that I do not take any medicines or treatments for one condition that might make one of my other conditions worse.

I have all sorts of twitching/spasming muscle problems all over my upper body, occasional speech difficulties with stuttering or saying the wrong word and not noticing, lots of vision problems, positional vertigo, bouts of intense pain in quarter-sized areas that mysteriously come and go, and a few weeks ago I started having the fun experience of random bladder control problems too that are also confounding to the doctor.  Yay, right?  Anyways hopefully the neurologist will have some ideas and hopefully I can get my optic nerve looked at too.  Thank you again :-)

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3521
   Posted 5/2/2008 10:41 PM (GMT -6)   

Hey Map Lady,

Make sure you are seeing a opthalmalogist and not an optometrist.  Lenscrafter is an optometrist.  That is a company that just wants to fit you for corrective lenses.  They may look like they have high tech equipment, but it is just to measure your visual acuity.  That light on a stick allows a doctor to check the health and appearance of your retina and optic nerve and other stuff.  I know that optic neuritis can be seen by a doctor.  Do find an opthalmologist and a neurologist that you have faith in. 

Also, as you mentioned, if you have one auto-immune disorder/disease you may be more at risk for other auto-immune issues.  You certainly have many symptoms of MS.  Good luck on your quest for answers.

Love and prayers,


Gretchen       co-moderator MS board       diagnosed with MS July 2006

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