If you really want to rest your mind, I would go for the LP.

NO it is not painful. You might get a headache, but if you do as the docs say it will go away. I know that when I had my LP I did get a headache, but as soon as I lay down it went away.

You have to rest, rest, rest.

My neuro said the same to me way back when. He told me that I had leissions (sp?) in the corpus callosum, and just a few neuro illness did this and MS was one of them. I had approx 22 leissons, he did not want to any invasive procedures, he was 100% sure. BUT the MS neuro said, NOOOOOOOOOO, must do LP and what ever else to confirm. bottom line. yep I had it.

But no the LP was OK. Do not listen to any scare stories. I would guess that you would always wonder...........what if?

I should look at my first MRI and see if I can the Dawsons Fingers on mine.

Sorry for your DX, but on the good side, it was quick. That way you can get on a CRAB asap.

All the best.

I agree, if you want more testing then talk to your neuro.

What you read about Dawson's fingers is correct - it is a hallmark sign for MS

Have you gotten a second opinion? Maybe another doc will concur and you can put your mind at rest and avoid the LP

I was diagnosed immediately as well, but my neuro still requested that I do total blood work up and LP and some other stuff. His MO the first year of diagnosis is to continue to look for other potential ailments just to be sure his diagnosis is correct - every once in a while he still asks me to do some additional testing or see a specialist for something else just to be sure.

I can't imagine being in limbo for years, but sometimes I wonder if I might have handled my initial diagnosis better if I had not been blindsided. I accepted the diagnosis initially then a few weeks later I was certain I was misdiagnosed and was being treated incorrectly. You should do what ever will put your mind at ease about your diagnosis it makes moving forward easier.

IMHO, I would not ever consent to an LP if I had clear and obvious signs of MS on the MRI like Dawson's Fingers. My first neuro would not have ever put me through an LP if my MRI was conclusive.

An LP is an invasive procedure not without risks. For those who said it isn't painful, I would have to disagree. Not everyone has a painless LP. Check out Gazelle's thread entitled "So Not Happy" if you want to see several stories of LP's that weren't easy: http://neurotalk.psychcentral.com/sh...ad.php?t=38801

My own LP wasn't nearly as bad as a lot of people experienced, but it was bad enough that I will not consent to another one unless there is a darn good reason to do it.

I know that it must be really hard to be blindsided with this dx, but rest assured that, in time, you will adjust to it and things will level off.

I'm sorry - I guess I should've been more clear -

I don't have "true" doubts - maybe I was being more sarcastic or grim than anything. I know my dx is correct. Yes, I've had 2nd and 3rd opinion. My neuro laughed when I first asked about the LP - he was like why in the heck would I want that! I know there is no need for that whatsoever. I think I was just mulling over - Gee, wouldnt it be nice if that could disconfirm this for me?! I know it doesnt even work that way anyhow.

I know that the Dawsons Fingers that they saw was basically the neon sign flashing on my MRI that said "MS: Vacancy here" that allowed the dx to be made so quickly and easily....thus, no doubts here or there or anywhere. Green eggs and ham said Sam I am.

I was just curious how many had similar experiences where the MRI was so glaring like that - b/c even tho many people have posted that they have positive MRI results with many lesions - they are technically still in limbo - which is what got me thinking, "huh?" - and then I remembered about the Dawsons Fingers thing....how it takes more than just holes in the brain.

My friends have been teasing me - that I can't just do things normally - everything has to be over-the-top, over achiever that I am.... even with MS - can't be simple about it.... nah, nope.... I have to have too many lesions to count, they have to be bigger than the usual few mms (mine are over 1.5cms)....dx within 2 hrs, dr thinks its one of the rarer rapidly progressing forms, blah blah blah...etc etc etc. Yep, that's me. Have to be different. LOL

Hey, at least I'm consistent, even with my MS!

~Keri

Hi Keri
I know you have had many responses to your post already, but I couldn't resist responding. I have had an MRI...which did show Dawson's fingers...or I was told 'evidence of'. I was told by my 2nd neurologist, who is supposed to be a renowned specialist in MS....that dawson's fingers are NOT a clincher in diagnosing MS. In 50% of cases where these lesions appears, women will develop MS. I also had an LP which was painless! Into my 3rd week of a week waiting period for the results. I have been told that even if the oligoclonal banding shows on the test, that can't necessarily clinch a diagnosis.......so frustrating!!!!! So, I have been told it comes down to a judgement call???
My symptom that triggerred this investigation was optic neuritis in my right eye...I have been diagnosed with an inflammatory retinal disease since I was 17....I am now 35.
So yes, this limbo is hell....but does it ever end? This doctor I saw last week told me that the only definitive way to diagnose MS is through post mortem biopsy.

Interestingly....with dawson's fingers showing...I have been told by the same specialist that many people go through their whole lives and upon post mortem autopsy, dawson's fingers have been found.

I don't know if it is better or worse knowing....not knowing, there is still hope. Knowing....you get to take some action to try and put yourself into remission.

I'm rambling now.....this is all so fresh for me...needing to vent I guess.
Best of luck to you.

Sandra




I'm sorry - I guess I should've been more clear -

I don't have "true" doubts - maybe I was being more sarcastic or grim than anything. I know my dx is correct. Yes, I've had 2nd and 3rd opinion. My neuro laughed when I first asked about the LP - he was like why in the heck would I want that! I know there is no need for that whatsoever. I think I was just mulling over - Gee, wouldnt it be nice if that could disconfirm this for me?! I know it doesnt even work that way anyhow.

I know that the Dawsons Fingers that they saw was basically the neon sign flashing on my MRI that said "MS: Vacancy here" that allowed the dx to be made so quickly and easily....thus, no doubts here or there or anywhere. Green eggs and ham said Sam I am.

I was just curious how many had similar experiences where the MRI was so glaring like that - b/c even tho many people have posted that they have positive MRI results with many lesions - they are technically still in limbo - which is what got me thinking, "huh?" - and then I remembered about the Dawsons Fingers thing....how it takes more than just holes in the brain.

My friends have been teasing me - that I can't just do things normally - everything has to be over-the-top, over achiever that I am.... even with MS - can't be simple about it.... nah, nope.... I have to have too many lesions to count, they have to be bigger than the usual few mms (mine are over 1.5cms)....dx within 2 hrs, dr thinks its one of the rarer rapidly progressing forms, blah blah blah...etc etc etc. Yep, that's me. Have to be different. LOL

Hey, at least I'm consistent, even with my MS!

~Keri




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hi keri,

i still remember how shocked i was when my MS dx was confirmed. and i had been having tests for wks before. i knew i was being worked up for MS but still i was shocked, and i'm an RN!

so i understand how you feel. it takes a while for that to wear off.
don't shoot me . i've learned to take things one, ok, maybe two, days at a time. i try not to think ahead. no one, even healthy people know what the future holds. all you can do is work hard to get the MS under control and live one day at a time.

the hardest thing i had to come to grips with was to listen to my body.
i know what my limits are and what happens if i try to push past them. visual disturbances and extreme weakness/fatigue.

you might even consider journaling. it really helps to clarify your feelings. and somehow getting it on paper is cathartic.

and, you might even consider some counseling. it's very helpful for me to be able to "detox" and talk to someone about what's happening in my life.

i hope your exacerbation levels off soon and you feel better.
we're here for you.

Despite the Dawson Finger effect going on in my brain, they had me do some of the other tests to rule out mimics. Mainly due to the small number of leisons. It was time and space from changes in my MRIs and Clinicals that cinched my dx.

LOL, it wasn't until he told me I was dx'd what type of leisons I had. I was like, "who's fingers are in my brain?".

I did the LP under Fluroscopy (sp?). It wasn't as bad as it could have been, but it was still one of the most unpleasent experiences I've ever had.

Totally understand what you're feeling. There are days I wish they could take this back.

Hang in there!

Keri, I happen to be one of those (few) who got dx'd without lesions but had a positive LP. So, my experience wasn't like yours

I don't usually discuss my LP - it was not a good experience but I had mine done in the dark ages Not only did I have the LP but right after that I had a Myleogram....WooHoo! What fun.....NOT!

I had a LP and other than knowing a needle was "back there", had no problems. Neuro got in 1st try, didn't know then it could cause a headache or pain, When it was over, it was over, period. Found it like a pregnancy Epidermal (do they effect some?) That's just me. Walking hurts me.