This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi Munchkin,

Everyone who is blessed to be able to come to the conference will miss you!

I am sure there will be LOTS of talk about it (likely ad nauseum -- you'll be sick of it in no time!), and perhaps they will put it on YouTube? That would be great, wouldn't it?

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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

It would be wonderful to be able to experience the symposium that way. I know there are a lot of people like me, they would like to be there but can't

My understanding of IUDs is that they irritate the lining of the uterus - mechanically and chemically (copper construction) - thereby preventing implantation of the fertilized ovum, while "the pill" does fool the body, and allays ovulation.

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My name is not really Johnson. MSed up since 1993

About the time I was DX in 2001, I had a lot of trouble adjusting to light changes. I'd come in from the sunshine & have trouble focusing for about 10 minutes. Eventually I realized that my left eye dilates and contracts at a different pace than my right eye.

It still happens, tho much less severely. No doctor has ever figured out why, altho we did do some tests, I think called "evoked response," that didn't give any answers.

Plus lately I've started seeing white flashes behind my left eyelid when I blink. It's lessened, but still happens.

V
PPMS DX 2001
Liberated 2010
Mild improvements in outlying problems

val57gal--I do not know the answer to this question, so I will post it here for the "eye experts," hoping that someone else does know the answer.

Are smooth muscles involved in the contraction and dilation of the eyes? Could a problem with the muscles result in your difficulties adjusting to light and focusing? Could the left eye and right eye be out of sync, as the smooth muscles of the urinary bladder (sphincter must relax when others contract to release urine) malfunction and cause bladder problems in MS?

Hi lindacarol and val57,

Trouble focusing and adjusting to changes in light/dark are very common for us. This is especially true if the macula is involved at all (any edema, early macular degen, etc.).
The third cranial nerve controls the constriction of the pupil, and if affected, the pupil on the "bad" side will be the affected eye. But as you are hearing on this thread (and I was suspecting), many of our symptoms come and go, wax and wane, and most doctors aren't used to seeing this. Either the third nerve is damaged or it isn't. But I think there is more to it than that for us.

Sometimes with third nerve involvement, the "bad" side will have the upper lid droop slightly, and the eye may not align with the other one...

It's too hard to tell much from the internet, but these are the kinds of symptoms I am the most interested in.

Thanks so much!

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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

Any ideas for the cause of `eye twitching`. I thought it was gone but it is appearing sporadically now again. This is not painful but a very annoying symptom.

Dr. Diana,

That is the first time anyone has ever had ANY explanation to offer me.

Not that I can do anything more with the information--I already have my optic nerve checked regularly (stable & fine)--but it's good to KNOW something (at least have a viable theory).

THANKS SO MUCH!
Val57gal

Hi Dr Diana,

I had floaters or black spots in my field of vision before dx 2007, I also had shooting bright stars if I raised my head up quickly during exercise. At dx severe diplopia, side by side, lasting for four month, left abducens nerve (VI) affected (brainstem lesion). Difficulties walking and reaching for things during this period, had to have a patch for one eye to be able to navigate without mishaps...

After ccsvi procedure in April 2010, black spots disappeared, better focus on left eye, better acuity, slight remaining double vision cleared (got better), pressure behind eyes eased of… people who know me said my look changed for the better - I had somewhat of a “dumb” glance before the procedure…

I had a 3rd OCT examination in Poland this May and am willing to share results if you are interested.

JohnAm
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Absolutely! Did you read Dr. Simka's study about the OCT? I hope I get to talk to him at the conference. It's tricky because it shows axon loss, but is not necessarily tied into CCSVI. And depending when it is performed, many of us can be suffering from some high intracranial pressure (which makes it appear as if we have MORE axons), ditto during optic neuritis. After the neuritis passes, though, then we show the axon loss.
And he noticed more axon loss on the side with the worse stenosis, but trying to judge which side is worse is HARD. I love the OCT because the measurements are so objective, though. I'd love to hear about your OCT's, if you're willing to share!

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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

You're welcome. But don't be so fast to assume we can't do anything about it (yet...).

Do you know if you have CCSVI? Thanks!

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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

Dr Diana,

I don't know if I technically had CCSVI, but I had jugular blockage and was liberated twice. Unfortunately, having PPMS, I only got a few minor improvements, some of which have faded over time. But my deterioration may have slowed--hard to tell. Thanks for asking.

Dear Dr. Diana:

I'll give you my $.02 worth but first I though you might be interested in this old paper I came across...

Old Paper

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Hi 1eye,

You must be psychic. This is EXACTLY the focus of my studies this week (with the progress made since this was written).

I will read it thoroughly this weekend, but I am amazed that you found this, and notice the potential relevance. There are certain hormones/chemicals that can cause unwanted constriction (and I believe I know what triggers this, hence the studying).

It's something I'll mention at my CCSVI talk, but with only 15 minutes to talk, I'll have to give it the once over very lightly. (It takes me 15 minutes to say my name and list my conditions!).

Will you be making it to the NY conference? If not, once I have my thoughts all neatly layed out, I'd love to circle back with you on this. I think you're on to a huge part of what is happening to us.

Thank you!

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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

The control systems theory I remember had certain recognizable patterns of failure which could be tracked down once seen. These were things like: oscillation, where a system has too much positive feedback and basically melts down (I used to have a diesel car that would start running on its crankcase oil)... under-damping, where your reaction to a disturbance is so quick you break all the furniture getting to your new spot in the room... over-damping, where the same reaction is way too slow, and you might miss the next disturbance while you try to adjust to the last one... there are others (like hunting), but these are three big ones.

What I'm saying is all these patterns are recognizable, and with a system as finely controlled (due to the 4th power resistance/diameter relation) as the temperature of blood, it should be a piece of cake to debug.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience