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Is this true - Nystagmus
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Is this true - Nystagmus

Hi Guys and dolls,

I'm in a slight state of shock, truely confused now i've just had my eyes tested again. The hole experience was somewhat sureal and i dont know what to make of it, so I need your help to work out what is true and what is BS.

To reiterate, in September I saw this optometrist and she dx unilateral Nystagmus, a horizontal jerk in my right eye. She also dx double vision which at the time she explain was to be expected with my eyes not working together properly. I have trouble maintaining focus, changing focus and she said it was because my eye jerked. Also dx unilateral sight deficit in my right eye, considerably different to my left, told me I was loosing my long distance as well as my short distance, and also explained about my needing prisms etc.

During that assesment she told me that I had a pale optic disc in my right eye, already noted on my file from prior testing, with the recomendation of this being regularly checked because it was probably early glacoma. There was no changes to the macular etc but i had a considerable amount of torturous ocular veins, usually seen in hypertensive, diabetes etc none of which I have, we had a discussion about the veins because she was quite perplexed by them. I wrote down each what she said and made an appointment with my GP the next day, so he was abreast of the these findings.

So in September i was dx with:
Unilateral Nystagmus (horizontal jerk, adult acquired)
Dilopia (double vision)
Unilateral pale optic disc (possible early glacoma)
Sight changes not seen on prior exams

I went in a couple of weeks ago to order my new glasses, money used else where so hence the delay, and discovered they had lost my file. Went back later when it was found but the script was difficult for the lady to work out, it was only for reading and I wouldn't be able to wear them all the time like i thought. After checking with the optometrist she asked for me to come back in for another exam to see if things had changed, so the script could be tweeked to suit. No problem, i dont want to lay out hundreds of dollars if they wont help my vision.

Today, she makes up the goggles with the script and i can see better but still not perfectly, the prism not really making enough of a difference, still couldn't see a crisp picture and everytime she flipped a lense i needed time to really get it in focus. Not half as bad this time cause it was only a few minutes with the end script and not the hour long testing that tires my eyes out and makes focusing even harder.

Here is where it starts getting confusing, she looks at my file then looks at my eyes with the light and then tells me I dont have Nystagmus and dont have double vision. Slightly confused I tell her what she said before also mentioning that since then my son had actually seen my right eye visibly moving on its own, caught when i thought my monitor was shaking and she states "there is no such thing, both eyes have to wobble, there is no unilateral Nystagmus" In shock i say but last time you looked at my eyes and told me my right eye had a horizontal jerk and explained it was called Nystagmus, how would I even know that unless you told me?  I said i wrote down what you told me and made an appointment with my dr to inform him of your findings. She states "I didnt write it in your file and can't see Nystagmus now!"

Me still trying to understand why she was talking differently to only a few months ago, I asked why the prism, wasn't that for the double vision? Her response was, "I dont disbelieve you think I said those things but i didn't write it in your file, I wouldn't of said that because you can't have Nystagmus in only one eye!" I wasn't impressed that she didn't write something down so for her the simple explanation was I missunderstood. Seriously there was no miscommunication at the exam, she told me as she found them, i wrote them down and even double checked the pronounciation, and why order prisms for the double vision if she never said I had double vision lol.

But wait theres more (shock horror yes) In exasperation i said dont tell me i dont have a pale optic disc either? She then proceeds to tell me that there isn't much to see, it is slightly paler but she wouldn't say its anything and then tells me you must of looked at it and thought the right was paler than the left. I must of sounded pissed off by that time, here she is now telling me that 'I' had decided it was pale. Not funny, she went into detail about the pale optic disc being on my chart from the last exam, no changes apart from the tourchourus veins. At the time I told her, to me they just look like eyeballs and didn't know what she meant by the optic disc was paler in the right eye, so she bloody well explained it to me, pointing out where etc. sheeees!!!!

I'm like a goldfish fighting for oxygen, but but but you told me about the pale optic disc being picked up on the test before and debating if it needed treating but you thought it was probably very early glacoma and not necessary. She looks in the file and says I dont know where you got that idea from, its not in your file, the last time the file says you were here was in 2003 and there is nothing about pale discs. Im thinking (*&$@&)*%&*@&% %&&%%@*%B @(*#(#*$*%!!

As calmly as i could, I say "i am sure you dont remember what you said to me back in September and are relying on what is writen on my file, I can not explain why you didn't write it in my file at the time, maybe you were busy. You've probably seen a hundred or more people since, but YOU told me exactly what YOU found as YOU found it and I wrote it down. YOU told me my right eye had a horizonatal jerk and explained Nystagmus to me, unilateral Nystagmus as you explained it and from what i have read since to try and understand Nystagmus is that it can be unilateral or bilateral."

She then says it might be unilateral if its neurlogical and tells me to talk to my doctor, telling me there is no point getting a refereal if it is intermittent and neurological, tests would need to be done as you are experiencing it. Ok i say, so what about my sight I still can't see? Today she is talking about distance glasses and driving but the script she made up was only for reading, the girl had trouble working out the order and I thought i could wear them all the time and with that script I couldn't.

So there is no confusion I say so are you telling me today that I need one pair of glasses for distance and another pair of glasses for reading, neither will have prisms, and i can't get them into one pair so will need to constantly change them. Yes apparently but she goes on to say that she would recommend getting distance glasses first, which would mean still not being able to read or see my own face. lol wtf so I point that out and she says well it is your choice!

ahhhhhhhhhh what the, I tell her i simply do not understand choice, do I need glasses or not, answer yes so where is the choice! I ended up not ordering any glasses, but making an appointment in Febuary, i simply wanted to leave and really didn't trust anything she recommended after taking back all she'd said before because it wasn't in my file. lol

sorry epic novel but i really am confused about this, tell me please if:

1. There is such a thing as unilateral Nystagmus ( one eye horizontal jerk)?
2. Can double vision resolve?
3. Can Nystagmus resolve?
4. Am i going mental?
5. Can the original hour long testing tire out one eye enough to cause a detectable horizontal jerk?
6. Was the pale optic disc only from power of suggestion because she read it as being there in a prior exam so expected it there again? And therefor because she no longer could find it in my file, it wasnt expected to be there so no pale disc?

Anyone uderstand this???

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15 Comments Post a Comment
987762 tn?1331031553
oh the cork screw optical veins that had her so confused and talkative now suddenly are not that unusual or meaningful because it happens, "there are a lot of tourtourus veins but they dont have to mean anything!" quite dismissive compared to when she first saw them, it was her that was going on and on about them being wrong!

I feel quite upset and confused!
1394601 tn?1328035908
I sure hope Cobob sees this post and responds.  He has a good understanding of eye problems and how they affect people with MS.  I have no clue but this I will tell you....

The woman is not professional.  You need to get the hell away and find an eye doctor that takes notes and can explain to you exactly what is going on.  Your sight isn't something to play with and personally?

I would be one HOT MAMA.  How dare any treat a client the way you were treated!!!!
987762 tn?1331031553
Thanks for responding, even though you can't answer my questions, i still really really appreciate the support. I also hope Bob responds, i trust his opinion!

I'm a little suprised at how upset i am, it takes a mountain to rattle me and I am feeling quite weepy, so unlike me, I usually laugh at everything. Its probably because she has no personal memory or personal interest of what she said or didn't say to me at the time of the Sept exam. For me it was all personal, in Sept she told me things I wasn't expecting, pale optic disc, Nystagmus, dilopia, ocular veins were in ? but she was quite specific in what each was called and what each meant, even saying thats why you get...... The double vision I wasn't sure of because i see an overlapping image not 2 distinct images, one slightly higher than so not exactly next to each other (eg F11= #111), i really didn't know if it was true double vision or not. SHE told me that it was!

She didn't remember me at all when I went in to get 'her' script filled the other week, so I am not surprised she's going off what is or isn't written in my file. I never expected this backflip, she only wrote numbers in my file and when it was eventually found the girls couldn't even work out what the script was. Why the prisms and why on earth would she want to retest if there wasn't something screwie with the script she'd written, there was only one script for one pair of glasses.

This is the first time anyone said anything about needing 2 pairs of glasses, so even thats weirdly odd, she only wrote 1 script with prisms and that script I was getting made up into 1 pair of glasses. Why is there not 2 scripts, one for reading and one for distance? My head is spinning trying to make sense of this, sheesh!

She handed me a couple of pamphlets as I was leaving, 1 is Presbyopia (common condition that makes vision difficult at normal reading distance, normal aging that doesn't affect distance vision, close vision becomes difficult particularly in poor light, may cause sore eyes, headaches or tiredness)  and the 2nd is for Hyperopia (the greater the hyperopia the harder it is to focus, vision is blurry especially close vision) neither of which have ever been mentioned before but this is now what i'm suppose to have wrong with my eyes.

Did anyone else notice that she didn't give me a pamphlet on distance sight issues lol seriously i see better in a mutted light because i am light sensitive and have been for years. My depth perception is off what about that, and i still see 111 with a line through the middle instead of a capital letter H, so if thats not double vision what the heck is it?

Sorry sorry sorry, i think i'm a little more upset than i should be, i suppose if i put my optimist goggles on, i could say that things are looking up.


572651 tn?1333939396
Did you have the chance to ask where your records might be since you had been there since 2003?  Sorry if I missed that point in the story.  That's why for the past two years I keep every last scrap of medical bills and information in case I have to reconstruct a timeline.  

Of course at this point this is all a mute point with this doctor because it could end up being just adversarial and not a healthy doctor relationship - not that it isn't already at that point.

Under the NHS and your limited specialist resources do you have an option to see another optometrist or are you stuck with her?  I would go elsewhere if that happened here, mainly based on the sloppiness of the medical records.

If you have questions on prisms you might drop a note to Michelle - her job is at an optometrist's office fitting prisms and she understand all the ins and outs of eye exams and fittings and stuff.

From what I have read and my knowledge of the subject, here are my answer choices - I hope I'm not graded on this quizx because I prefer multiple choice over true/false  LOL

1. There is such a thing as unilateral Nystagmus ( one eye horizontal jerk)?  YES, if you look at clips on nystagmus you can see it demonstrated in some types

2. Can double vision resolve?  YES, a large part of it depends on the cause of the double vision

3. Can Nystagmus resolve? YES, again depending on the source of the problem.  You can have BPPV and it will stop if the vestibular problem is corrected.  If it is acquired nystagmus, such as a neurological problem, it might respond to drugs (baclofen or botox are two txs that are mentioned)

4. Am i going mental?   Dealing with all this medical stuff makes us all mental at times, so the answer is probably yes, but it too can be resolved  LOL

5. Can the original hour long testing tire out one eye enough to cause a detectable horizontal jerk?  YES - I am answering this as strictly a guess but if you use any muscle long enough you can tire it to the point it will malfunction.

6. Was the pale optic disc only from power of suggestion because she read it as being there in a prior exam so expected it there again? And therefor because she no longer could find it in my file, it wasnt expected to be there so no pale disc?   Sorry, I lost my Ouija board and can't divine the answer on this one as to how she was interpreting what she saw.  From what I understand, the eye cannot regenerate the nerves that are damaged that cause the pale optic disc.  If anything I will hope that she messed up on the first time and your optic disc is in better shape that she had stated in September.

What do you think your next step will be?

1221035 tn?1301004108
I have had nystagmus in only one eye as seen by my neuro. and I have had double vision that has resolved and came back again.
Nystagmus refers to rapid involuntary movements of the eyes that may be:

Side to side (horizontal nystagmus)
Up and down (vertical nystagmus)
Depending on the cause, these movements may be in both eyes or in just one eye. The term "dancing eyes" has been used in regional dialect to describe nystagmus

Double Vision:
In Multiple Sclerosis patients this condition is caused by scarring in the brainstem where the cranial nerves serving the eye are situated. This leads to a lack of co-ordination of the muscles controlling the eye movements and this in turn causes double vision. A patch over one eye or prism glasses can help but these are only recommended in the short term as they can make the brain lazy. Magnifiers and large print can make focusing easier.

In Multiple Sclerosis it is usually caused by scarring in a part of the brain called the medial longitudinal fasciculus. It can resolve itself spontaneously and the brain can learn to ignore the jumping movements, returning vision to normal. Steroids can help as can the drug clonazepan. Anti-convulsants and muscle relaxants have also been used, as has Neurotin, a drug used for seizures.

1466984 tn?1310564208
Wow!  I can't speak to your eye issues - I have no expertise in this area, and haven't had any dx issues my eyes.

But I certainly can understand your frustration.  You have enough battles to fight without adding this idiot (and I say that with the kindest affection) to your list.  She sounds very incompetent.

Can you go to an opthamologist?  Or a neuropthamologist?  Would your plan cover that care?

I personally wouldn't waste any more time with this person/office.  It sounds like you were very good in asking her all the right questions, and still came away as confused as ever.

I was wondering the same thing that Lulu asked - where are your records from your appt in Sept?  I was also wondering if she even had the file for the RIGHT patient?  That's how crazy it all sounded.
SO you're justified in all your thinking - but it's NOT you!

Hang in there, and I hope you can get some answers soon!

1453990 tn?1329235026
I'd consider seeing seeing a neuro-ophthalmologist (a Neurologist with a sub-specialty that concentrates on neurologic vision disorders)  or at a minimum an experienced ophthalmologist.  Optometrists are fine for glasses and refractive (eye glass issues.)  

The problem is that optometrists should not be messing around with ocular diseases.  Nystagmus is always neurological.  It can range from a congenital benign nystagmus to an acute issue with a cranial nerve.  All nystagmius should be evaluated by a Neuro.  Also. while pale optic disks can be a sign of glaucoma, it can also be a sign of an inflammation of the  Optic Nerve as seen in Optic Neuritis (ON).  Many folks with nystamus do not have double vision since their  eyes tract together, and many folks with ON do have double vision.  

A simple test is to take your hand and cover one eye.  If the double vision goes away, it might be the result of the nystagmus.  If you still see a double image with one eye covered, it is most likely the result of a neurologic signal delay.  This is where the expertise of a neuro-ophthalmologist comes in.

I'm not discounting Optometrists, but the one I saw started my on the road to my diagnosis by sending me to a neuro-ophthalmologist.  He explained that Optometrists see a lot of ON in Colorado and there is a high incidence of MS here, so they know to send them to a neuro-ophthalmologist.

Avatar f tn
When I was dx with nystagmus, I had no idea what it was. I actually thought it had to do with my surgeries to my eyes.  The strabismus doc. that I saw was examining my eyes and it did it in front of him. He sat back and said, " did you know you had nystagmus?", I thought is was something like astigmatism or something like that, and I didn't even ask at the time what it was

Little did I know  it was neurological. I have asked every doc. that I have,   if the nystagmus was caused by my eye disease or the surgeries and all of them had said no.

I am sorry for your frustrations, I have had a whole mess load of drs. that don't help and they just confuse you more when they contradict themselves and make you look like the crazy one.

As far as the nystagmus not able to be in just one eye, is garbage, I have it in just the eye that has the optic nerve damage.

Good luck,
1221035 tn?1301004108
Nystagmus can be from: 1)Congenital or 2) Acquired

Congenital nystagmus is usually mild, does not change in severity, and is not associated with any other disorder. This is the most common type of nystagmus.

Inner ear disorders such as labyrinthitis or Meniere's disease can lead to acquired nystagmus.

However, the most common cause is probably toxic -- certain drugs or medication, including Dilantin (an antiseizure medication), alcohol intoxication, or any sedating medicines can harm the labyrinth. It is one thing the police officers look for when pulling someone over for a suspected DUI.

In young people, a common, serious cause of acquired nystagmus is head injury from motor vehicle accidents.

In older people, a common, serious cause is stroke (blood vessel blockage in the brain).

Any disease of the brain (such as multiple sclerosis or brain tumors) can cause nystagmus if the areas controlling eye movements are damaged. Areas like the medial longitudinal fasciculus (MLF), cerebellum, and the brainstem, where the cranial nerves arises.

147426 tn?1317269232
I have to run out to tweak Christmas, but this is why I don't go to an Optometrist for anything other than refraction.

Absolutely, ABSOLUTELY one can have have unilateral nystagmus!!!  The asymmetry of it is what screams neurological disorder.
You need to see a neuro-ophthalmologist.

Sheesh!  What a dunderhead!

Avatar f tn
Wow, how frustrating!!! Don't go back to that place :-), gee after that treatment, not writing in your file etc. I would be finding someone else (FAST).

I agree see a neuro ophthalmologist, or even an ophthalmologist, and optometrist is not as geared up for these kind of problems.

I had nystagmus at the same time i had abnormal VEPs, it is recorded on my chart, I think it was only in my right eye, which is the one with the disc palor, did they take pictures of your discs for comparison studies, I have had this done so we can monitor if it is getting worse.

Go somewhere else.
I loved your book :-) it was a good read, shame it is a true story.

987762 tn?1331031553
Sweet sweet people, I thought i'd sleep on it and see if I wasn't so discombobulated, nope made no difference to how I feel, and unfortunately I still can't see any better. I really dont know where to go from here, i've been trying to find a neuo-ophthalmologist in my state but so far no luck, as scarce as hen's teeth!

If i look at some writing only using my right eye, close is totally unrecognisable everything is so overlapped and blurred i can't even begin to guess. Far away, I can just make out some words by there shape and guessing, i cant really see and wouldn't be able to do it for any length of time, its worse the more I try, the letters are all overlapping and i do see one slightly higher, i really cant work out most of the words at all.

If I look at some writing only using my left eye, close is recognisable not nearly as bad as my right eye, for example 'V' looks like 'W' i can guess some words right but i did think a word was 'molley' and it really was 'trolley, the overlapping 't' next to the overlapping 'r' makes it look more like an 'm' to me. Its not as blurry though, definitely a sharper image. I have to say that far away is a lot better again, I could get away with reading this way, not perfect but who's looking for perfect lol. All I have to do is close my right eye and hold everything about 80cm away from my face and she'll be apples lol!

Thats actually quite interesting, i still see 2 images when i'm only using one eye!! I didn't know that could even happen lol.

I have to say that wearing magnifiying glasses and having a big screen monitor helps reduce the distortion from the overlap, not a crisp image but it does make focusing easier and I can read ok enough.

I still have upper eye lid (rythmic) tremors as soon as I close my eyes its never really gone away since it started what almost 2 yrs ago but they dont tremor at all if my eyes are open. I also have parasthesia in my face too, tingly nose tip that comes and goes, the underside of my right eye running up to my temple tingles all the time now, it plays up more if i close my left eye lol.

Anyway, I think my eyes need retesting and even though we've been going to the same centre for about 10 years (optometrists have changed in that time) but i'm not going to believe a word that women says so i will need to be brave and tell my GP so I can get a referal to at least an opthalmologist but hopefully a neuro-opthalmologist if we can find one.

Seriously guys and dolls, i didn't take this tib bit of news very well, but i am calmer now, you guys helped just by listening ahhhh i mean reading lol. I do not have one doubt of what she told me in September, none at all, she was absolutely positively too specific. I can speculate on why she backflipped, and i'm sure its a lot to do with the file not being filled in right but I can't do a thing about it. Oh i can prove i was tested in between 03 and 2010 but i dont think thats going to be helpful anyway, so i prove she's wrong about that but i can't prove what she said or didn't say, even my notes aren't 'real' proof. lol

I think she didn't know why she created that script with the prism because there was nothing written in the file but the numbers, no clues to explain why she ordered the prism. I suspect she probably wanted me to come back in to see if the script she wrote was correct, it was a free appointment and nothings free with out a reason.

So after all that, thank you, I now know i still see double vision with only one eye, that the unilateral Nystagmus maybe due to the muscle being tired, which makes a lot of sense because the same thing happens to other muscles. And i know what I was told is true, even if she doesn't remember or wrote it down, and thats no reflection on me though it could mean my optometrist is dumber than dumb!

645390 tn?1338558977
What a mess of a visit you had.  Sorry you had to go through all that. I do hope you are able to find a Ophthalmologist that you can get to or even better, a Neuro Ophthalmologist.

They would  be a better choice for you.  Optometrists are doctors of optometry. (not medical docs).  They are fine for a "normal" eye exam, where glasses/contact lenses are the only thing that would be needed.

Ophthalmologists are medical doctors, who can see and treat diseases of the eye (they also do glasses/contact lenses) but they have all the medical training needed for treating the diseases of the eye(s).

As far as the pamphlets she gave you:  Presbyopia is something everyone has when they turn around age 40.  Are lenses in our eyes are not as "flexible" as they once were, so reading glasses are given or bifocals if you already wear glasses.

Hyperopia, is "far-sighted".  It can affect distance vision as well as near vision.  It is just the "type" of glasses you need.  Also, one eye can be more hyperopic than another, which would be why you see better with one eye than another.

Both of these things are part of a "normal" eye exam.  Most people are either hyperopic or Myopic (near-sighted).  Presbyopia is also a normal finding in people age 40+

As far as the double vision goes:  If you have double vision with both eyes open, and disappears when you close an eye, that is the type of double vision that can be helped with prism glasses. The kind of double vision where it is only 1 eye. is not related to a "brain" issue.  Usually that type of double vision is caused by an uncorrected astigmatism, cataract, dry eyes, corneal problems etc.  Prisms are not used for this.

Yes, you certainly can have nystagmus is only one eye. and yes it can resolve on its own. Double vision can also resolve depending on what is the cause/and which muscle(s) are being affected in the eye.

That is it from me for now, too tired.

Again, sorry you went through all this aggravation,

1207048 tn?1282177904
Oh boy! You need a new doctor...hopefully an ophthamolodist.

1. There is such a thing as unilateral Nystagmus ( one eye horizontal jerk)?
**YES! I started out with downbeat nystagmus in my right eye. When I have vertigo the nystagmus shows up on both eyes, but most the time it is only in my left, and not too bad.

2. Can double vision resolve?
**I'm not sure. I do not have double vision (though at one exam the PA asked me twice if I have double vision, and then my neuro asked me twice. I finally said "Am I supposed to? Would you rather I did?" which made them both laugh.)

3. Can Nystagmus resolve?
**I'm not sure on this, either. Mine showed up in late March 2009, and I have had it since. As I said above, if my vertigo is acting up it is more noticeable if you look at my eyes. Most the time it is not noticeable unless you are looking for it. I only know it is worse because my eyes get tired feeling...also kind of like my eyes are rolling around in my head like a cartoon character.

4. Am i going mental?

5. Can the original hour long testing tire out one eye enough to cause a detectable horizontal jerk?
**I would think that is possible.

6. Was the pale optic disc only from power of suggestion because she read it as being there in a prior exam so expected it there again? And therefor because she no longer could find it in my file, it wasnt expected to be there so no pale disc?
**I think your doctor takes crappy notes and that is the bigger problem!

I hope you can find a new doctor!
987762 tn?1331031553
I do feel a lot better, all your imput helped though i am still up $%!& creek with out a paddle and have to start again lol

I wrote a post last night, it took me a long time, it actually shocks my how long it now takes me to write, by the time i'd finished it was nearly midnight, and my computer hiccuped and it was lost, its happed a few times and its driving me batty, so here goes again.

For many years i've had intermittent blurry vision, and focusing problems, it didn't last longer than a few days to a week but every time i've got it checked i've been told i have 20/20 vision, I have never needed glasses. The test I had just before my big bang episode in 09, I was told for the first time that there was a minimal change in my close vision but it was so slight it didn't warrant correcting with glasses. My light sensitivity was picked up and it was suggested that i wear coloured fashion lenses and always wear Polaroid sunglasses in sunlight, I wear the sunnies but can't stand looking at everything in any colour so dont bother with the coloured lenses.

Prior to 09 I had never before experienced an overlapping image, it was only ever just slightly blurred and it would come good again. When this started in 09 it wasn't anything like what i see today, I wouldn't even call it double vision, it was more a ghost shadow just slightly to the right and above, like a bad photocopy. If you put one hand on top of the other, and move the hand thats underneath slightly up and to the right, you'll see what i'm trying to say, it was just a slightly off like a shadow affect.

Since then (probably after each new episode) the second image has split further apart from the image in front, so now I see a V as W etc. It is definitely overlapping, not 2 distinct images with a gab between each, it is still connected, overlapping.

I cant explain why but if the writing is enlarged the overlap is reduced, I tried wearing magnifying reading glasses and it helped, when I stopped being able to read my laptop even with the magnifying glasses, I got a big screen attatched to my laptop and thats also helped. As soon as i had enough physical control I booked my self in to get my eyes checked, I knew i'd needed glasses so wasnt surprised about that, it was all the other things she said that was the surprise. lol

I do think writing makes the issue stand out more though plucking my eyebrows has become bit of an art form ROFL. seriously between the depth perception, visual spacial, tremor and double vision, i can't tell you how many times i've stuck my self in the face trying to pluck that wayward little hair.

Anyway, thanks for being who you are, your all wonderful and helpful people!!!


PS 2011 is going to be my year!!!

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