This Is MS Multiple Sclerosis Knowledge & Support Community

DrDiana wrote:Hi Not Johnson,

Thank you!
Can I ask you, when you get those vivid color panels that move, do you ever get a headache after that? (mine are black and white. Somehow, I feel slighted now...)

and the "bloated eyes" -- do they just FEEL that way, or do your eyelids actually get puffy?

Thanks so much

And:

Oh, Not Johnson,
I'm sorry, I forgot to ask...
Do you know if you have CCSVI (and were you treated?).
:)

Hi Dr. D,

No, I have made no connection between the coloured panel/grid and head aches, though I tend to ignore/be oblivious of pain. I think that I am always in some kind of pain. (I'm sorry that your panels are just in B/W. The purple ones are so cool! I dream in vivid colour too - when I dream.)

The "bloated" eyes are a sensation only, as far as I can discern. I relate it to intra-cranial pressure, as the effect disappears after PTA.

I have had 3 PTAs. The most recent was with our dear Dr. Sclafani. His IVUS revealed septa/duplication in both IJVs. Enduring resolution seems difficult to achieve in such a situation - without stents...

Thank you, Cece and EJC.

This information is exactly what I was looking for!

All to be revealed soon!

Diana

Johnson wrote:I have had 3 PTAs. The most recent was with our dear Dr. Sclafani. His IVUS revealed septa/duplication in both IJVs. Enduring resolution seems difficult to achieve in such a situation - without stents...

It must be frustrating to have tried three times, although it is a step in the right direction to at least know why it hasn't been working.

I remember Dr. Sclafani discussing duplications, he had some other ideas in addition to stents, although they may have been blue-sky ideas.
www.thisisms.com/ftopicp-148742.html#148742

Sorry DrDiana for the off-topic!!

DrDiana wrote:Hi CD,

Thank you so much for your help.

Only 35 symptoms? You ARE doing well...

Can I ask you if you still have any feelings of your car moving when you look out your window? (after the CCSVI)

I'm so happy to hear that CCSVI has been a great benefit for you,

Yes, 3/4 of those 35 symptoms are gone now.

I drove today, and tested and tested. I looked out the car side window. I don't have the, "My car in moving feeling," when it is not. That symptom is gone I guess too.

My right eye that has been involved with O.N., had a vitreous detachment, come to think of it. I had a big, black spider webbing over all of my view. It absorbed in two days, never to return. This was in 2008.

That same right eye is always puffy on the top lid, and itchy. I thought allergy, but only the one eye? Everyday it is puffy and tears run in the morning in the inner corner on that one riight eye. Eye dr. said try Blink lube gel. Hmm

My 2 cents:
Before m ccsvi treatment i had the following symptom:
When i took a hot bath, my total body went weak and tired. My eyes went, as i call it, out of contrast.
When i looked straight at a text, i could not see it, just a gery/black cloud. when i looked beside the text i could see it and readit.

After treatment i can take a hot bath without these symptoms, although my eyes still become a bit out of contrast when i'm tired.

Robert

Hi Dr.Diana

If you are still collecting information - here are some of my symptoms:

ON in left eye that blocked vision when I looked down and to the lower left side. Happened once to my recollection. happened in 2002

Intermittent double vision in left eye when looking to the right or laying on side (either side). It is now permanent. started in 2000

Jerky eye movement when looking to the left so it doesn't affect reading. started in 2006 is permanent.

Had a bad relapse in 2008 and words were vibrating, I couldn't read anything for 2-3 weeks and then it slowly started to improve.

After CCSVI the jerky eye movement improved until my left jugular started to collapse and then it returned.

i wake up with blurry vision too. in the past i have had on a couple of times but not as much as iritis. i also have the deep pain inside the eyes, especially when i move them. and i have had double vision for years (always to the left, in a recent flare-up it also was when i looked up and right. every single movement made me ill and i didn't want anyone to move in my field of vision and i wouldn't look at anyone, now it seems to have stayed; side by side; i only feel comfortable looking down; not good for socializing). often when i look at things they "jiggle" or move, like lines move or digital clocks dance. bright light is too intense, like sunlight. i can't see at night; the lights are so confusing. i am extremely nearsighted and i have trouble fitting contact lenses. my eyes are very dry. this is going to sound weird, but i swear that something about using my eyes makes me go to sleep. (?) some things improved after a ccsvi procedure. not all. good luck with your research. what a gift to have dedicated professionals like you.

Recently I went through one month of lower right eye lid twitching. It was continuous non-stop at times. I thought I would scream if it did not stop! I went to the eye dr. and she found no problem behind the eye. Than all of a sudden it stopped. But I have to wonder if it had anything to do with the fact that I increased my magnesium and calcium intake. When I stopped them the eye twitching stopped. But I don`t know if there is a correlation or not. I had the CCSVI surgery Sept. 2010. No improvements in nerve pain in arms and hands what so ever. No change at all for me!

Johnson wrote:

DrDiana wrote:Hi Not Johnson,
and the "bloated eyes" -- do they just FEEL that way, or do your eyelids actually get puffy?

The "bloated" eyes are a sensation only, as far as I can discern. I relate it to intra-cranial pressure, as the effect disappears after PTA.

I have had 3 PTAs. The most recent was with our dear Dr. Sclafani. His IVUS revealed septa/duplication in both IJVs. Enduring resolution seems difficult to achieve in such a situation - without stents...

I'm glad to hear the effect disappears after PTA. I know Dr. S and others are working hard at perfecting stents for us, so hang on!

Will you be attending Dr. S's conference, BTW?

In fact, can I ask that of everyone, or Cece, is that on Dr. S's thread?

Thanks so much!

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?

CD wrote: That same right eye is always puffy on the top lid, and itchy. I thought allergy, but only the one eye? Everyday it is puffy and tears run in the morning in the inner corner on that one riight eye. Eye dr. said try Blink lube gel. Hmm

Hi CD,
Let's forget MS for a minute. Whenever I hear someone describe ONE eye in that condition, there is often times a lid "lesion" of sorts causing it (what we call 'lumps and bumps' - molluscum contagiosum is a common one, and they can be VERY tiny -- easily missed).
Do you sleep on your side, perchance? Do you sleep with a ceiling fan on? Sometimes when we sleep on our side, the pillow kind of pushes the lid open a bit, and the ceiling fan dries out a section of the cornea, causing watery tears to form (not the "good" kind of tears with oil and mucous).

Did you try the gel (I think I know the answer to that!).

Robnl wrote:My 2 cents:

Robert

Thanks. Robert. I think that is worth 25 cents, MINIMUM!
So glad to hear the angioplasty helped with that symptom!

munchkin wrote: Intermittent double vision in left eye when looking to the right or laying on side (either side). It is now permanent. started in 2000

Jerky eye movement when looking to the left so it doesn't affect reading. started in 2006 is permanent.

Hi Munchkin,
Well, ain't that a pisser when the symptoms return -- I'm sorry to hear they're back.

Do you mean that when you look to the right, your left eye doesn't follow? Or is it reversed from that? When you look to the left, do BOTH eyes become jerky?
If that should ever bother your reading, BTW, (say, if you have trouble finding the beginning of the next line after reading a line, just turn your book about 45 degrees counterclockwise, so that you are reading down to up, if you can follow that. Some people find that to be very helpful.)

Do you ever have any facial pain, sinus pain or deep eye pain when your eyes are acting up?

Finally, I wouldn't say "permanent" -- it's amazing how quickly science is moving right now, my friend.

Nola wrote:i wake up with blurry vision too. i also have the deep pain inside the eyes, especially when i move them. and i have had double vision for years (always to the left, in a recent flare-up it also was when i looked up and right. every single movement made me ill and i didn't want anyone to move in my field of vision and i wouldn't look at anyone, now it seems to have stayed; side by side;

Thank you for sharing, Nola. I can relate to everything you are describing. Can I ask you if you get motion sick easily? I got so bad that I couldn't even LOOK at a ceiling fan for a while. Ugh.

Every symptom we share with each other will get us closer to answers. I firmly believe that. Nola, your comments are a huge help. Thank you!

Hi DrDiana,
My first symptom was nystagmus 30+years ago that resolved within a few days. I now have deep sharp eye pain upon movement of the eyes several days out of the week. (lots of migraines)
My right eye gets blurry quite often. (like when you have film in the eye but you really don't)
Fast moving objects are hard to follow with the eyes, such as scrolling on the computer screen or something on the tv.
Bright lights seem extra bright. Hard to drive at night with all the headlights. Grocery store isle with bright things like laundry detergent isle makes me feel I should have sunglasses on.
I have had alot of symptoms that are from the vestibular system I am told.
The neurologist never has been able to diagnose me with ms. I have had 3 episodes in the 30+ years. I do have ccsvi and have been treated once in Bulgaria and Dr. Sclafani tested me and I have re-stenosed.
I hope this is helpful.