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 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. 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. 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!

Attached Files

	Blepharospasm.pdf (125.2 KB, 312 views)
	MS vision problems.pdf (125.7 KB, 217 views)
	MS resources public.pdf (19.2 KB, 216 views)

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

Bobcats - whatever may be wrong with you, please know your feelings are quite normal. Others who aren't sick don't get it.

That doesn't make it healthy to never talk about it. They may not want to hear about it - some people are not good with that, you know? But that's what this place is about. Glad you found us, and hope we can help you in that way.

One favor please... could you break your writing up a bit? Hard for me to read,



BTW, please pop in on Wednesday for Limbo check in, okay? Good luck with all of this.

sure BGB i will try to break it up a bit. this has been a venting space for me today and my eyes are now paying for it. but i will keep you in mind. cheers.

That last post was broken up better, but more more more

What I can offer about the MRI being clear for you is my experience.

My first MRI in 2001 was clear too. Now I have two lesions (2007). My LP came back clear, my blood was all normal and I had a VEP, also normal.

Very hard to get a dx when it won't show up! Have you seen an Opthomologist Neruologist? They are specifially for the eyes. These doctors can be key in discovering ON sx and a regular neuro or reg optho may not have the skills needed to discover this stuff.

He suspected MS in 2001, but b/c my MRI was clear then, he couldn't dx me. Now in 2007, he says probable MS. My regular Neuro says Probable MS too.

Problem for me is when you have sx and no dx, THEN you think you are crazy...thus my suggestion earlier today.

How long have your eyes been 'under attack'? Maybe in the coming years it will improve like mine did...oh...but I did get accupunture for a year in 2002 that made a HUGE difference...and been steady like I am now all these years.

I've never met anyone anywhere (even on a board) that has this sx as I describe it....thanks for sharing your story.

Well, Bob!

Welcome to the boards here!

And you and I are practically neighbors! (compared to everyone else here!)

I was curious if we had the same neuro, but when you said yours emailed, I knew my neuro didn't!!

Bob, most of us have been in limbo for a period of time. You just need to do what you are....keep researching, read MS books.

But Bob, for your sake, I hope that whatever you have is curable.

Peace.

I want to thank you for this, I, and I think several others, can no longer read large blocks of unbroken text so I've missed far too much of your writing.

I'm really glad you found this board though, and I wanted to say hello.

DEAR READERS AND NEW FRIENDS. I HAVE LISTENED TO WHAT YOU ARE SAYING AND I HAVE ADAPTED ALL MY RELEVANT POSTS TO LARGE PRINT PDF FILES THAT CAN BE READ IN A NON-BLOCK FORMAT!

I HAVE INCLUDED AS MANY ATTACHMENTS TO THIS POST AS THE FORUM WILL ALLOW. THIS IS A TEMPORARY FIX TO A PROBLEM THAT WILL BE REMEDIED IN FUTURE POSTS.

THANKS FOR THE SUPPORT AND LOVE!
SINCERELY RACHAEL (BOBCATSRULE)

Attached Files

	LIMBO LAND THREAD #1.pdf (24.4 KB, 210 views)
	LIMBO LAND THREAD #2.pdf (30.6 KB, 177 views)
	Limbo Land Thread #3.pdf (23.3 KB, 170 views)
	Limbo Land Thread #4.pdf (48.3 KB, 222 views)
	Limbo Land Thread #5.pdf (28.4 KB, 215 views)

HI All readers and friends,

This is the last post that i made that wasn't able to be attached to the origional post of ez reading.

thanks to all!

Rachael

Attached Files

LIMBO LAND THREAD #6.pdf (26.3 KB, 200 views)