well Ms. Jeans i wish i could expl. all the tests i've had to you. However, all i know i is i've had a lot of bloodwork (no idea what they were testing for - all came back normal) and none of the standard tests for MS. (I had a "normal" MRI about 6 years ago) and since that time it has been all down hill from there. that Normal MRI was from the time when i could play sports and hopping up to walk across a room was no biggie! Now that is not the case (with the walking across a room being no big deal). i imagine that within the comming days I shall have wonderful things done like LPs and MRIs and stuff like that. :rolleyes: I probably don't have the kind of blethrospasms either that your MIL had b/c mine is much like yours. the eyes just slam shut and don't open. it isn't primary benign blethrospasms anyway that you and I probably have. we most likely have the "secondary" blethrospasms which is the type that has a cause (ie: lesions in some areas of the brain that affect eyelid opening). that is the only type that has the identifiable cause. I'm really glad that I'm talking to you though b/c they were going to try botox on tuesday and I think I'm going to refuse and ask for further testing first before I allow them to do that. I was going to resist anyway b/c I had my suspicions about what they were saying that there was more to it than just simple little eyelid closure problem.

the good news is i got my neuro's attn. I called his office today and mentioned a word doc to the receptionist that i have been using to write down the "wierdies" as i call them. the sx that make no sense at all but that are very real! Like the "attacks" of nerve pain and things like that (refer to the description of the attack at 16 to see what i mean by Nerve pain). I had previously never shared those things with my neuro but i have now and i have a feeling that there will be more tests coming down the pike but that the new info that i just brushed off as "normal" or "slightly odd" or "top secret" then that will help him make the right dx.

when i described them to her in breif she immediately gave me his email address and encouraged me to share that doc directly with him TODAY. I had called her b/c i was wondering if the info might be relevant or if i should continue to brush it off. (typing with eyes closed is such a wonderufl thing!) she felt that it was legit. so here i am, going under the limbo bar hoping to cross out of limbo land for good and into the land of the appropriate treatments.

btw i have had several x rays of lungs and a cat scan or two but nothing w/ contrast to help them see much of anything. all major anatomical features appear normal. now we get into the land of little things that you can't detect with the necked eye. sounds like more needles :Sob: to me. GREEEEEAAAAT! :icon_rolleyes: :thud:

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.

The Limbo Lost... This Thread Adapted For Ez Reading
 

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! :grouphug:

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! :circlelove:
SINCERELY RACHAEL (BOBCATSRULE) :wink:

The LIMBO LOST... THIS THREAD ADAPTED FOR EZ READING
 

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

Industrious, isn't she!!!??? ;)