Well said Cricket!! In case you missed it, because I could not get a dx, I chose on my own to investigate this possibility....for me and my family....so that I could put this possibility to rest. I was scared that the therapist would say "Yup, you did this to yourself", but he didn't. I'm working on other issues as in life, we all have things we could talk out and feel better for. It is helping my mind...and I don't feel anxity or depression....hell, who wouldn't get depressed after what we go through? I will never have to wonder now, and I can tell that to any doc that would suggest it in the future :) (FTR: My Neuro just said we are going to wait and see....he never suggeted it was emotional)

Thanks!! :hug:

Just want to share that not many on this board say this...but I have this too! In 2001 when I saw my first Neuro/Optho...he susupected Blephrospasms and we tried to treat it. When it failed, that's when he went to the MS. I appreciated him looking at all possibilities. This doc to this day, calls me a 'probable MS patient'.

For me, my eyes squint and blink, forced eye closure, blurry vision, double vision and ghosting. To this day, these symptoms have never left. I've learned to live with it, so I don't mention it much. I guess when you've lived with a sx for many years it becomes a part of who you are.

This is a very visable sx to the outside world. It has dropped my self esteem and my confidence level. When I'm talking to people who don't know me, I feel so isolated and like a true freak! Anyway....just wanted to share that.

I don't understand this one, You eyes close on there own when you try to keep them open? :confused:

A simple answer...Yes! When it was at its worst, I sat there watching TV,etc, with my eyes closed, which was like a forced blindness. I could open them, but then they would shut again. This was my first attack. Now it's mostly squinting and uncontrolled blinking, with blurry vision. I also have sharp stabbing pain behind my eyes, much more like what others here describe.

Again, not one I discuss much.

Wow, thats awful. I thought I had it bad with the dropping eye lid and twitching and than my left eye (all of this is mostly my left eye) doesn't like to open all the time (mostly when I'm tired).

good news for you greenjeans! I have some info that i think will be educational for everyone on the forum. i too was just dx with blethrospasms and like you my neuro wants to try botox injections in the eyelids :eek: which i'm not crazy about and i had a feeling that b/c of the other sx that the botox might actually do more harm than good. (which i just got permission to send an email directly to my neruo and when i told the scretary what was going on she immediately gave me his email b/c she felt there was something to what i was saying. I was flat out blunt and hoenst with the neruo in my documentation and didn't hold back anything from him about the symptoms. i included lots of detailed examples!) yeah i'm having those wonderful eyelids closure problem right now really severely and it is causing severe doubble vision and blurry visoin. oh yeah and eye pain like crazy. good think i can type with my eyes closed and that i type so fast so as to make the most of the times that i can briefly see! for anyone who is interested in this rare disorder that goes hand in hand with MS please see the link that i have attached to this message. it is a pdf file that i created on myc omputer from the most authoritative sorce on blethrospasms dr. Janorvik from TX (i think). Green jeans you and i are NOT alone. there is a network of people out there that i frequently talk to called MS friends and there is a lady in TX who has the same problem we do. Thanks for being bold enough to share it! BTW knowledge is power and ignorance is fear. keep your chin up greenjeans there is hope out there! the article that i am attaching says nothing of MS but there are other sources that i have researched that do mention MS as a possible cause. green jeans have your neruo check for leasions in the basil ganglion/celerbellar/brainstemarea (he will know what i am talking about) that can cause this. :circlelove: well i'm gonna go and sucumb to the closed eyes and freak some people out and make them think i'm sleeping. that is if there was anyone around that i could psyc out liek that. :grouphug: be ye glad btw greenjeans that this only happens when you have attacks! It happens to me EVERYDAY 24/7 and the mornings are the worst! i think u will find this artilce very intersesting. Hee hee hee typed this in 5 mintues flat!

I did the botox injections for about 6-8 months back in 01/02. It did not help at all. Only time has made it better. Later, my MIL got blephrospasms, and they are nothing like what I have...and the botox worked for her. Usually, Blephro's are only in one eye. Mine sx are in both. I don't have the 'twitching' that is characteristic of blephro's...I have forced shutting, blinking and squinting. Definately nerve related.

I have had several MRI's and I have lesions, but not where you inquire. I have never heard that blephrospams are associated to MS, but I'll check your link out...

My Optho/Neuro I saw again last year, and he took that dx away and has me listed as possible MS since I also have vertigo, numbness and cognitive issues (different attacks thru the last 8 years) which are not related to the blephro's. I think he's on to something...but MS has a way of hiding out for some people.


PS: Please list all the tests you've done and the result. MRI? LP? BLOOD? OTHERS?

The first link you posted did list MS as a dx considered sx related to blephrospasms. (Did I say that right? LOL)

Very interesting...I did all that research years ago, but this is the first I've seen about Blephrospasms and dystonias related to MS. Very interesting. Thanks.

My MIL has that twitching, so I've seen it first hand...but mine is more of a control issues, the best I can describe it. The more tired I am, or if under a stressful situation like talking to a boss about something, my 'tic' as I call it, gets worse.

Again, good article...thanks!

PS: I have to recommend that you break up your paragraphs more often, many here including myself, have difficulty reading long paragraphs...Many here will appreciate it :D

Sorry if I was not clear. This is all day, every day since 1999 for me too. Sometimes an attack can do enough damage to give you a new normal. My normal is as I described, accept I can now keep my eyes open as a general rule. I still get the forced closeings now and again...but I blink and squint all day everyday :(:rolleyes::D VERY ANNOYING!