Sudden and now 'chronic' pupil dilation (right eye)

[sultryskies]

December 2005...In the A.M. I had large right pupil...took up most of the color(iris?)...now in dim light it is always larger...different sizes at diff times...had optic neuritis in 1993...I can feel it when it is not right...kinda numb...any thoughts?...have numerous neuro symptoms but my mri was clear so I want to know why my eye is different...possibilities?

[3ponies]

hi, just recently my daughter noticed that my right eye stays dilated even in the sunlight of normal daylight, I have been suffering form muscle strain in my neck which causes a tension headache, I also suffer from allergies, causing pressure to build up in my right sinuses. I was wondering if that could be the cause , or if it is something to be more concerned with, such as a stroke which is what my daughter is afraid of. I also suffer from migraines about 2-3 times a month.  ty , sincerely maria danel  
ps   I am new to this page , so if u could post me to my email with attn. eye trouble , I would appreciate it, ***@****

[Annie62]

Bartson,

If you think your pupil is too dilated (even for the dark) then I would make an appointment with your PCP if you have one and tell him exactly what it is doing.  Maybe he could turn the lights off in the room in order to make it happen so he could see what you are talking about.  Sometimes constricted pupils (and possibly dilated ones are as well, I don't know) are associated with headaches and benign, but it could be something more serious even if it is associated with a headache.  You should go to your doctor to be safe.

[Bartson]

So, I am 38-year old male.

3 weeks ago, my left eye would fully dilate in dark rooms (almost no iris showing). In bright room, the left pupil reverts and matches the right pupil.

This wednesday, I felt pressure behind the left eye, all day. I have had a slight headache ever since Thursday morning. Nothing will get it to go away - advil, aspirin, etc - I do not usually get headaches that last longer than an hour or two an dapirin usually works.

My dad gets terrible migraines, but nothing related to his eyes - the pain I am suffering is slight, so I do not think it is a migraine.

I am getting nervous - any thoughts?

[Annie62]

Well, I'm still recovering from eating too much at Thanksgiving.  Guess you don't have that holiday in Canada.  It's when Americans celebrate all that they have to be thankful for (like the land they stole from the Indians, etc. :) and then go out while it's still dark the next morning ("Black Friday") and run each other off the roads and knock each other over trying to get from one sale to the next before the "doorbusters" go off--when the clock strikes 12 you can't buy a TV set for 15 dollars anymore...what a nightmare.  

The ANA is the antinuclear antibody test.  It is a nonspecific test that is mainly used to test for lupus (99% positivity in lupus and usually in high titers), but is also mildly positive in a lot of other autoimmune diseases including MS.  It can also be positive in longstanding infections (HIV, etc.) and even from some drugs.  I was just curious if you had it done-it's not a test that is done to test specifically for MS but I have read that many people with MS test mildly positive.  I've had it done four times since '94 and it has always been mildly positive.  It was thought more in the past (and is still possible actually) that I had a connective tissue disease (like lupus, etc).

I'm like you..I love to read and in the past 10 years (since I've had the internet) I've read everything--just trying to connect the dots and figure out what the hell is wrong with me.  I could probably write a thesis on autoimmune diseases from all the research I have done.  I almost don't know what I will do if I actually get a dx up at Mayo after all these years!...go back to reading more of the stuff (literature, political) I used to read, I guess.

Some of our symptoms are the same and some are different.  You have a lot more spasticity and twitching and tightness of your muscles apparently.  Other than the tightly wrapped feeling/pain of my chest (sounds like you have something similar) I don't really have muscle tightness.  The only twitches I have are in my eyelids.  I like to compare notes, though, on symptoms, and I'd be interested to hear what you are eventually dxd with.  I hope that day isn't forever down the road for you.  If I don't get a dx at Mayo I probably will never get one.  

It's not a good thing that you have to wait so long for tests with national health, but even if you have private insurance like I do, if you don't have the money to pay the coinsurance or deductible you put off going to the doctor for more tests, etc.  For instance when Jan. 1st rolls around I will have a $1000 deductible on my insurance that I've got to meet before the copayments for my meds ($30 and $50/month) doctors visits ($25 for PCP and $50 for specialists) and coninsurance on tests (20%) will kick in.  Even with my Rx plan I still have to come up with $170 a month for my meds.  One of my drugs for my gastroparesis i get from Canada (via England) because it's not even legal here yet, so I have to pay out of pocket for that one.  I have to check the mailbox every day (I never know what day it will arrive) so it doesn't melt!  Actually, it's finally nice and cool now.  I can't believe it goes up to 100 degrees in Canada...that is worse than here in the summer.  Anyway, by December I will literally have run though all of my savings in this 12 1/2 year quest to get a diagnosis, and I feel that if I don't get one at Mayo I don't know what I will do.  My body is just too damn tired to work full time and I can't support myself on the little I make.  Somehow I doubt George Bush or Dick Cheney has these worries.  But no national health care for Americans.  

Well, take care and we'll talk later.

[sultryskies]

Well here is chapter 3...har har...I am just going to put down my thoughts in no order..just as they pop into my head...The health care system here is great in many ways...you pay for your provincial(state)insurance based on your income tax for the previous year...I am low income...less than 30,000 a year..so I do not pay anything...but then you also have the wait and some are forever...some people wait over a year for certain procedures...we are now having the private health care fight...some places are doing private procs in the same places as "public"...if you pay you wait 3 days...3-12 months the other way...kind of a crock but the US is either you buy it or you don't get it...so I guess we have it better..that does not include meds but there is also a system in place that based on your income tax they figure out a deductible etc...but the high income people are getting choked having to pay for everyone...but I always say I went to the hospital and had my kids and never saw a bill...FOR NOTHING...
What is an ANA?...that will drive me batty...I am not a scholastic language lover but I too love the written word and think it is sad that there are people out there who do not like to read...I read everything...every word I see...I can not sleep if I don't read first.  Heat kills me....our summers are about 30-35 degrees celsius...100 f....and even the oven can get me loopy...I get dizzy and nauseated...and hot...feel like I am HOT I have to drink cold to bring me down...or stand on the cold bathroom floor to get me "temp" down...Spastcity is TIGH TIGHT TIGHT....my legs felt like they were atrophying...I got calve muscles showing...I am 5'3 and 113 lbs...and I never could see calf muscles...my arms are bi-ceppy...and I ain't the most active person...I do not drive(never had a license...long story) so I WALK and my leg symptoms...numb, tingly, tight, heavy,...I looked like I was walking with boards in my pants..bending knees just didn't happen usually in one leg more than the other..but when I do/did walk down the stairs my legs "shake" "quiver" "buckle"...I am on baclofen and at first it was a miracle...I could bend over and touch the floor after 3 days..didn't do that in years...I could shave my armpits without seeing silver and black spots...and could run...it is still a miracle but it does not take care of it all...not like I expected it to but when you feel so good so fast you can't wait to see how far it will go for you...The tightness...I hear ya...I had my first "real" bout of it last fall and I thought it was indigestion (I don't get that either)..and I had eaten at work...but since then I have had it and it is just unbearable....tight tight tight...The myoclonus is odd...when I had my bad attack in Dec. with the eye thing...I was buckling...my legs would pull up towards my chest...bad when i would lay down...like my whole body want to go into fetal position...not all the way but that direction...whenever I stop moving...my body pops all over..my feet jump...my calves pop, thighs jump..twitch...stomach muscles tighten like I am going to show you my six pack...(this is giving me a sculpted tummy though...my face twitches...my lips pucker out on there own..kinda like a body Tourettes syndrome...drives me wonky sometimes...but better knowing what it is...
Well gonna sign off til tomorrow...night

[Annie62]

Don't ever apologize for writing novellas, I am about to write one :)

Well, it sounds like you had classic optic neuritis from all I have read about it.  Since from what I read (unless I interpreted the info wrong), 69% of ON leads to MS within 14 years, that alone should be a reason why the doctors should be willing to do an MRI with contrast of your brain.  Doesn't the MRI w/o contrast only pick up recent lesions, or is it the reverse-old ones?  I can't remember.  I hope you will go back to the doctor and try to get them to do another MRI with contrast.  I know it is expensive but they should be willing considering your past ON and all your other symptoms.  

The dilated pupil thing could be from anything, including MS, and I think it involves the 3rd cranial nerve. (I'm sure you know more about it than I do since you have it and have probably read up on it).  I wish I had gone to an ophthalmologist when I had the ptosis, anhidrosis and contracted left pupil back in '90 (Horner's-very first thing I had), but I didn't have good insurance and quite frankly didn't seem to worry about it much then even though it was a very bizarre thing to happen.  I eventually got sent to a neurologist who told me it was probably benign but could be due to a chest/Pancoast tumor.  From what I have read recently, there are only a few things that cause Horner's syndrome that includes loss of sweating on one side of the body (as opposed to above the collar bone only), and one of those few things is a demyelinating lesion.  So he should have done an MRI of my brain/C-spine instead of a chest x-ray.  

I have also had symptoms flare up during my cycle, but it happened every time I ovulated (and I've always known when that is because I'd get pelvic pain, usually on the left side, and then would start my period 13-14 days later).  The first time it happened was in '99.  I was living up North and after getting a really bad intestinal/bacterial infection which brought back all of my chest weakness/pain, faintness/trouble breathing, I woke up a couple months later with mild weakness in my left leg and then in my left arm.  It was mild but my foot was heavy/dragged some.  A couple months down the road I was at a mall and got up from a table and started walking and my breathing slowed down (it's like a mechanical thing/effort to make my chest go up and down), felt faint, my mouth on the right side started pulling down, and my left leg became partially paralyzed/could barely lift my leg to walk.  The person I was with thought I had a stroke.  I was initially unable to speak (but I was not confused, had no headache, and the weakness was on both sides of by body), and then when I did my speech was very slurred.  None of the symptoms were new (they had all started just a few months prior), but that was the most sudden and severe I have ever had them.  Later on that night I got pelvic pain and started my period 14 days later.  That has been a pattern ever since, with a big-time flare-up of all my symptoms-leg/arm weakness, breathing/chest issues, tingling/heaviness in my left leg and arm, etc.  Somebody on this board told me not to go into that with the doctor when I go to Mayo, as it would turn into an endocrine evaluation, but I am definitely going to tell her as I have read stuff since this all started that some women with MS have exacerbation of their symptoms during ovulation.  I have more chance of winning the lottery than this being a coincidence every time.  I think it's due to hormones more than the rise in body temp., as it lasts for 4-5 days every time.  It was a living hell and very frightening to have this to look forward to on a regular basis.  But I have had irregular periods for about 7 years now and am going through (I think) an early menopause, and I am GLAD!!  Anyway, I know hormones play a big part in autoimmune diseases in general.

I'm not sure I understand exactly what myoclonus includes.  Other than something that happened with my ear back in '99 (and I haven't had since), where when every time I yawned I would get a really rapid vibration in my left ear that would last for about 15 seconds and then suddenly stop (I think it might have been stapedial myoclonus from what I have read, but not sure), I don't think I have myoclonus.  I have gotten what I call "charley horses" in my calves, big toes, arch of foot, neck, and a couple really bad ones in my middle back affecting my breathing, but these aren't that often and I don't know the significance of them.  Do you have more of a muscle tightness, muscle jerking or spasming or what?  Is that myoclonus or spasticity?  I know some myoclonus, like hiccuping and sleep myoclonus/jerking are usually benign but haven't read much on it other than trying to figure out what happened with my ear in the past.  

Also, the thing I have with my chest feels like I have a restraint tied around my chest.  I can't even stand to wear a bra and don't when I am home.  It is a constant pain/discomfort/weak feeling (though was worse when I first got it in '94 after a URTI) and got worse with ovulation, so I am not sure if this is what I have read is MS girdle/banding (if I even have MS), as that seems to be described as usually fleeting in nature.  I have read some people describe it as affecting their breathing though, as it does mine (it's something totally different from asthma chest tightness-I have that too).  

My trouble swallowing/choking started in '99 also-was bad when it first started but for the most part disappeared.  However, in the past few months I have noticed a regular thumping on the left side of my throat again when I swallow, and I am hoping it doesn't get any worse.  

Whether Mayo in Jacksonville is good is yet to be seen (the one in Minnesota if probably better in general), but I think it really all comes down to my interaction with the doctor and my ability to communicate with her.  She is an MS specialist (I looked her up on the internet) so I assume she knows her stuff.  If the MRI comes back negative again I hope she will be willing to do an LP as well as evoked potentials, as I've read 5% of MS doesn't show up as lesions on MRI.  And if it's not MS, I hope she can figure out what it is.  The only other thing I thought was possible was some kind of systemic vasculitis, for which I have not been tested for.  

Have you had an ANA done?  Just curious if it was positive.  Also, does heat exacerbate your symptoms?  I know depression is very common in MS.  I've read it can not only come from having the diagnosis but also from the disease/brain activity itself.  Are you on meds for it (can't remember what you wrote)?  If so, I hope they help you.  I have some mild depression just due to my ongoing symptoms/lack of diagnosis/money worries, etc. (don't even know how I am going to pay for Mayo yet, though my insurance will cover most of it).  I also have a brother and now a sister that are seriously ill, and that causes a lot of worry/anxiety about things to come.  I feel sorry for my mother.  

Well, I wrote more like a novel instead of a novella.  I also like words/writing.  That's what I studied in college (literature/creative writing) before I unfortunately needed to drop out-long time ago.

I won't be leaving until the 4th but I will definitely let you know what I find out.  Just hope she isn't arrogant and listens well and this time I am more articulate/not intimidated and get it all out.  I'm a better writer than I am a speaker, especially if I feel I am not believed/taken seriously.  And let me know if you go back to a doctor and get any more tests done.  You really should consider going to an ophthalmologist to check out your dilated pupil, especially if it is happening every day where he/she could see it in the office and also mention your past ON to them and your conern about MS. I don't know how the health system works in Canada, but surely they would consider doing another brain MRI on you or maybe even evoked potentials would pick something up.  I'll talk to you later.  

[Annie62]

Sultryskies,

Does your right pupil stay dilated even when it's light in the room/outside so that it is larger than the left one?  I mean, it's normal to become dilated when lighting is dimmed, but when lights are turned on/becomes light outside the pupil should become contracted again and be the same size as your left pupil.  I had just the opposite-a contracted left pupil years ago as part of Horner's syndrome, but I never went to an opth. and didn't go to a neurologist until 1 1/2 years after it started, and all he did was a chest x-ray (which of course was normal) and never even saw me in follow-up.

Can't you make an appointment with an ophthalmologist or get your PCP to refer you to one so they can look at your eye, or is it difficult to get in to see a specialist?  Maybe if they saw your dilated pupil while it's dilated they could do further testing on your eye and suggest some causes, and you could also tell the ophthalmologist about your past optic neuritis as well as other neuro symptoms that you are still experiencing, and maybe you will finally get an MRI of your brain done with contrast.  I just read that MS is diagnosed in 69% of people with optic neuritis after 14 years.  I knew there was a high correlation between the two but I didn't know it was that high.

When you had the optic neuritis, what exactly did you exerience--blurred vision, dimming/graying of vision, greyed out spots like scotomas, or what?  I don't know if what I had in '98 was optic neuritis or not, because I didn't have good insurance and didn't go to a doctor at the time, but I had significantly blurred vision in my right eye (the opposite eye that I had the Horner's in) and also when I closed my one eye and then the other I could see a difference in the color of things--what I saw through my right eye was grayer colored.  For instance the paneling in my house up north was more of a golden color through my left eye and darker/grayer through my right when I would switch open one eye and then the other.  This actually went on for over six months.  But I didn't have any spots where I loss my vision completely (like what I think are called scotomas).  To this day I still have a slight difference (color discrepancy) between the eyes and my right eye gets a little hazy when I walk.  Since you were actually dxd with optic neuritis, what exactly was yours like, if you can remember that far back.  Do you still have any residual blurred vision/color discrepancy in that eye?  

What other MS-type symptoms do you have?  I think I remember from your other posts you mentioned what sounded like a lot of muscle spasms, spasticity, etc., but I can't remember for sure. Do you have any trouble swallowing, urge incontence/running to the bathroom all the time, etc.  What about fatigue?  That is a big factor of whatever I have and has gotten worse over the past years.  (I still haven't gone to Mayo-they rescheduled me at the last minute-but am going in two weeks.  I'm so afraid she is not going to be willing to do any (or the right) tests and tell me to go home and live with it, but I do feel better prepared mentally this time with what I am going to say/have written everything down, etc.)

[sultryskies]

Thanks for your posting...Optic Neuritis was a trip...I thought I had a migraine and had a Dr. appt within the next week so I waited....when I got to the doctor he looked in my eye and said "I don't know what that is!"..The optometrist got me to an opthamologist.  My symptoms were a black spot in the center of my vision(not a spot per se but an empty black blank hole in my center of vision...if I looked at your face I would only see your ears, hair etc..your face would not be there...it wasn't just blurred it was GONE..very scary..., pain in the socket, red green color blindness, all white things were green, depth perception off. I had an hour of IV steroids a day for three days...I got all my vision back but I do have a yellow filter over my eye now...everything is dimmer and a shade darker..I have many floaters and phosphenes...I can feel it numb now and I know when my pupil is big by the feel...days when I feel crappy my eye is usually more noticeably big..I have days where it is out by a mm or so...but some days my whole iris is covered except a sliver...My other ms like symptoms that I deal with daily are...spasticity, myoclonus(this is the worst thing...when I stop my body/muscles twitch and jerk), my eyes go loopy in the way I see the ground...if the ground is not smooth I have a hard time with the height/depth of the differences...the ground seems to "move", I have had the swallowing thing once..but my friend(dx with ms)has it often...she gags on water...I have not had the ordeal of peeing myself but the urgency is there...and I pee alot some days more than others...I was dx with depression after my ON and that is common, my memory has really faltered in the last year, I stutter and have read one person say "it is worse when I am on the phone" and that is me...I can talk up a storm and love language so this pees me off...my feet are numb most days...the fatigue is not really a problem for me...I don't think I would call that a symptom for me but some days it hits me like a ton of bricks...and my period kills me...I think the uterus is affected too but there is no info on that but I live it...My fingers go wonky...tough time putting in earrings for example..I bet if you really thought about you would be able to "chart" your course.. the times I thought I was sick with a sore body...the shakes....and such it may not have the flu...just a hard thing and I want to hear about your DR. appt ...up here the MAyo clinic is regarded highly(from all the media mentioning and writings...is it the same old **** shoot with them too?...Just Dr.s doing their job or is it quite a "special" hospital? I hope this gave you some insight...if not sorry for writing such a novella for you...til next time...ciao

[kitlyn]

Hi I have had this too, for past 4 months..and never any eye trouble , before,, MY rt eye pupil is bigger than left and looks more open, I had to go to ER over weekend due to my head pressure and they did CT of my eye sand said no tumor behind but cannot rule out brain tumor due to my MRI w contrast/It scares me too w this eye thing..but unfortunately i have to wait till my blue cross kicks in to get lumbar puncture.