Weird eye symptoms? Help?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby euphoniaa » Fri Jul 01, 2011 6:21 pm

Hi DrDiana,

I wondered whether or not to post my own very weird eye experiences, because mine all have actual names and most are common in the general population. But...I do have definite MS. And...they're really weird, per your request. And...some have gone away. So here goes.

1. Macular Edema (swelling of the retina that often comes and goes on its own): Got dx’d about 30 years ago due to a blurry spot in my vision. Had to take an oral steroid for a short time – which is when I swore I’d never touch steroids again. My eye docs could still see it until about 10-15 years ago, now it’s gone. None of my current specialists have seen any sign of it now.

2. Astigmatism
(“a common, mild and generally easily treatable imperfection in the curvature of your eye. The condition can cause blurred vision.”)
: I noticed in high school that horizontal lines were so blurry they disappeared, while vertical ones were clear. I just needed glasses for this, and then I could see my piano music again. :)

3. ON (Optic Neuritis): Never had it. No sign I’ve ever had it.

4. Dry Eye Syndrome: I use eyedrops. So do most of the staff at my eyedoc’s office.

5. Early in my dx, my neuro saw a "touch of nystagmus." She's never mentioned it since.

6. Ocular Migraine: The absolute wildest of my eye events, but it seems as common in the general population as the rest. I called my nephew the optometrist while it was happening and he assured me not to panic, but to see a doc – that it sounded like a classic ocular migraine presentation. So, I made drawings of what I was seeing while I was waiting for a ride to the doctor.

A short time later I wrote this (totally true) description (because that's what I do to entertain myself :) ): I was talking to a co-worker (1-1/2 yrs ago) when I noticed that gradually her face was being covered with a big, round halo of flashing, sparkly sprinkles.

Then the sprinkles morphed into a circle of bright, multi-colored, abstract, strobing zig-zags. The red/blue/black/white design became more & more one-sided to the left and erratic as it wore on, then split into a giant, flashing, zig-zag "L” that spread out wider & wider, brighter & brighter. Like a brightly lit ferris wheel, it swirled around the edge of my vision, and then floated up & vanished out through the upper left corner of my sight in a final explosion of yellow & white bars and it was gone. In 20 minutes. I was almost too fascinated to be scared. There was no pain and there were no after effects.

My local doc, an ophthalmologist, just nodded his head at the description, did a thorough exam, & looked at the drawing I had made of the design in my eyes. He confirmed it as a classic ocular migraine aura. He reported that they're common, that he and his wife both have them a couple times a year, and if it happens again exactly the same way I should just shut my eyes for 20 minutes and enjoy the light show. If I get something completely different I should call him immediately.

Plus, 9 out of 10 patients in the waiting room were unimpressed – they told me their ocular migraine stories while I waiting with them.

When I researched it I found out that this is why it was so easy to dx:
During an ocular migraine, you may see:
Flashes of light
Zigzagging patterns
Blind spots
Shimmering spots or stars


Finally: I just found out that my 60-yr-old MS eyes are actually very healthy despite their history. My glasses scrip has barely changed in 2 yrs, and my nephew did a couple of thorough scans sending me this report (plus he sent photos if you want to see them):

We did a GDx scan which scans the nerve fiber layer of the retina... the GDx detects any thinning of the nerve fiber layer. We also did digital retinal imaging of the fundus, or "fundus photos". These are actual images taken of each retina. Points of interest include the optic nerve, retinal blood vessels, and the macula (red spot).
Result: Two very healthy eyes. And no early signs of nerve damage detected by the GDx.


So, I fear this post won't be the slightest bit helpful to you because I never do MS right, but I sure do love telling my ocular migraine story. :D And I wish you well with your research!

P.S. I've never been tested for CCSVI.
-
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby Cece » Fri Jul 01, 2011 8:20 pm

DrDiana wrote:
Cece wrote:Sorry DrDiana for the off-topic!!


Cece, you're kidding me, right? :) Please jump in any time. You are a cornucopia of knowledge...
:) Oh, and will you make it to the conference?

I can at times be a little corny! :)

Here's the conference thread: www.thisisms.com/ftopict-16372.html

Yes, I will be in attendance, with my husband in tow!
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Eye symptoms

Postby Ned » Fri Jul 01, 2011 10:57 pm

Dear Dr Diana

Early on in my MS history, about year 6, my eyes became "fixed" straight ahead. I couldn't move my eyes to the left, right, up or down. If I wanted to look to the left or right, I had to turn not only my head, but my body to look in that direction. This was very inconvenient, & made driving impossible. This lasted for nearly a month before I was able to move my eyes normally again. I have only had one episode like this.

Nancy
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Postby DrDiana » Sat Jul 02, 2011 3:04 pm

Hi Kathyj08,

I am very much like you! I even went to a "neuro-sensory center" where they checked my balance, my "ear reflexes" (hard to describe), the ability to correctly follow moving targets, etc. I sucked at most of it, as did my son. When I had a flare, I did even worse -- even the objective tests.

I now take acetazolamide to take pressure off of my brain and have started treatment for mast cell disease. Wow, what a difference.

I'll put up some more videos on my site about this (Prettyill.com), but you may want to see my written theory, and pick out what seems to pertain to you.
http://bit.ly/moYbIB

Also, after I speak at the CCSVI Conference, I'd like to share everything I talk about -- I think you, in particular may benefit. Cool?

I have 1 brain lesion, and although I have symptoms of M.S., I do not (exactly) have M.S. The more I learn and study, the less I think I know what M.S. actually is.

Maybe I'm going backwards. ha.

Hang in, and thank you for offering your symptoms!

:)
Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
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Postby DrDiana » Sat Jul 02, 2011 3:10 pm

Hi Ned (Nancy),

Do I have a sick sense of humor? I laughed out loud when I saw your name!

OK, YIKES. That had to be very frightening. Isn't that something that it went away? That certainly supports my theory (and that of many others, I'm sure), that we are not always dealing with demyelination, (What, the nerves demyelinated all at once, then grew myelin all at once? hmmm..)

Thank you for sharing that. Did you ever have any facial or deep eye pain when that occurred (or any facial numbness?)

Thanks so much, Nancy-Ned!
:)
Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
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Postby DrDiana » Sat Jul 02, 2011 4:04 pm

Hi Euphoniaa,

Wow, that is the best description of an migraine episode EVER! :) And that is exactly what it is, too. I seem to have gotten the short stick on auras, though, as everyone else's are in color. Mine are always black and white. Poo.

We are more prone to migraines, though. I'm looking into the reasons for that...

and with some people the dryness becomes debilitating. Hopefully, yours will not. If something changes, I'm happy to try to help.

Thank you for your wonderful post.
:)
Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
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Postby DrDiana » Sat Jul 02, 2011 4:09 pm

Hi David1949,

Yes, it may be the start of a symptom, but it's too soon to go into "freak-out mode" FOR SURE.

Let's just hope this one passes...
:)
Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
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Postby munchkin » Sat Jul 02, 2011 8:33 pm

Hi Dr.Diana

It really is a pisser (much nicer term than I have been using). I don't think my veins were open long enough to make a difference. For a couple of days after CCSVI the jerkiness was gone and then returned. CCSVI never seemed to affect the diplopia.

The diplopia is when I look to the right and when lying down on my side (I'm not sure what's up with that).

The jerkiness is when I look right to left so I have trouble locating my place on a page. Thanks for the hint, I will try it, because it is a problem. It's pretty subtle, so I'm not sure if it is both eyes or just the left (my assumption).

My right eye used to be sore, but more of a surface pain. It was like something was scratching the lens. The optometrist felt that it was from having dry eyes and it seemed to make sense. Funny thing is I used to get fairly bad headaches from lying on my side watching TV. These have pretty much stopped over the years.

I am hoping science catches up to where my veins are at this point in time because I certainly felt liberated after CCSVI.
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Eye pain

Postby Ned » Sun Jul 03, 2011 8:57 am

Hi Dr Diana -

My name - ha ha! Yes, Ned was my nickname as a schoolgirl - the first letter of my christian name followed by the first two letters of my maiden name. It seems stuck with me forever!
For many years I had a severe intermittent left eye pain. It was like a vertical line from the top of my head & through my left eye. The left eye only, but this eye was also affected by optic neuritis & I have vision loss here permanently (only evident to me when I shut my right eye, the left eye vision is blurry & can only read the single top line letter of an eye chart). Initially I took Prednisone for the eye pain, but as it persisted for years, I then just took strong pain kill.
For the first eight years of my MS, my then neuro said I had every symptom imagineable. This was relentless, & the neuro suggested I start a family, & it may bring it into remission. So my husband & I had three kids 2 years apart - I went into remission as soon as I first became pregnant - & stayed that way for the next 7 years.
Another 18 years has passed since then & there is a story there, but not about eye pain!

Nancy - Ned
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Eye pain cont.

Postby Ned » Sun Jul 03, 2011 9:07 am

Forgot to mention that I had Bell's Palsy on the right hand side of my face on about year 7. My face dropped right down, but luckily this was a short episode for only a few days. The right eye, eyelid & brow is a slightly different shape now.

Ned
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Postby DrDiana » Sun Jul 03, 2011 11:58 am

Hi Munchkin,

So your diplopia was POSITIONAL sometimes, hmm? Veeeerry interesting.

I'm so sorry about your vision problems, and the short term relief with CCSVI. Say, will you be going to the CCSVI conference?

I have some theories about all of this, and am considering a free webinar of sorts for you all to show you the presentation. You seem to fit some of my thoughts...

Thank you for your help, Munchkin.

:)
Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
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Postby DrDiana » Sun Jul 03, 2011 12:00 pm

Hi Ned (it still cracks me up),

Did your doctors tell you why they thought pregnancy would slow down or halt your symptoms?

Boy, I'll BET you have stories to tell!

:)
Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
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Postby Cece » Sun Jul 03, 2011 12:36 pm

It's very interesting that it worked! I had three children each two years apart too, but it was not on doctor's orders. :)

The autoimmune theory explains the improvement in MS during pregnancy because of changes in the immune response so as not to do an immune attack on the baby but the CCSVI theory explains it due to the enormous increase in blood volume during pregnancy and subsequent changes in vasculature.
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Postby DrDiana » Sun Jul 03, 2011 12:58 pm

Hi Cece,

This is something that we see with Ehlers-Danlos, too. But I'm wondering -- because of the hormone changes after the baby's birth and the drastic decrease in blood volume after the baby's birth, EDS/POTS patients tend to be much MORE sick after the baby is born (but are symptom-free during pregnancy).

Does that not happen with EDS?

About the immune theory -- does it make you wonder if an IUD could "fool" the body into thinking it is pregnant (I guess it does that in order to prevent pregnancy) and thus slow EDS symptoms?

Interesting...

Thank you for allowing me to think out loud, if you will...
:)
Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
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Postby munchkin » Sun Jul 03, 2011 1:01 pm

Hi Dr.Diana

Unfortunately, I can't make it to NY although I would have loved to be there to meet all the thisisms people and of course to hear what the dr's are saying.

A webinar would be great, I am thinking that some of my problems might be structural in nature. But I need to work on getting my history together as I was a fairly reckless child resulting in many injuries.

Kim
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