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.

Morning Keri,
Wow, quick dx for you! Dawson's fingers are pretty much all you needed

Your post got me thinking about getting a fast dx. That must have been very traumatic. One day all is normal, the next your world was filled with MS. That must have been very difficult. When people are in limbo, they have months or years to consider this....and maybe even come to accept what it could be.

The vast range of emotions you must have felt, and are still feeling must have been so hard, and maybe still are. The disbelief. I'm so sorry that you got hit out of the blue like that.

Thank you so much for sharing your story today....it really put some things into perspective that I hadn't thought about before. I hope and pray that your current flair finds the door real soon....and all can get back to 'normal'....at least this time and maybe for years to come. I can hope that for you anyway

I think your observations speak to so many points, but I'll try to narrow my answer to the ones that no one else has touched much on yet . . . .

MS mimics so many diseases, both in symptoms and testing. There are several conditions that have lesions and/or similar LP results, so what they are looking for is a combination of factors.

Even if they suspect MS, there is a protocol that must be met in order to give the dx. They look at our symptoms (c/w description), history, clinical neurological testing, combined with MRI, LP, EP, etc testing. Depending on the results of all that (sometimes glaring), we may get an unofficial "possible", "probable", or definite dx. Most often though, TIME (usually months, occasionally years) is what cinches the dx for many people though.

Regarding how "easily" you (and others) have gotten the dx vs. how difficult it is for others . . . that speaks to the point of how lesions aren't the end-all, be-all with this disease. They are important in the dx process, but that's about the extent of it. I know people who've had almost all the symptoms of MS for many years, and some are in much worse shape then me, but they have very few (or no) tell-tale lesions. There are others that have the dx and lots of lesions, but they make out fairly good in the long run.

I have also heard of many people who's MRI looks great after being on a certain drug, but they continue to decline physically. Relapses (or lack thereof) do not correlate directly with the long-term prognosis on disability either (although they can make life difficult at the time we experience them).

There are sometimes obvious factors that make the dx fairly easy, like dawson's fingers. As Snoopy said, these are "hallmark" for MS, and I don't think this result points to ANY other disease/condition. Many of us do not present with things in such a nice, neat little package . . . but that doesn't mean others without these exact findings won't progress with the disease in the same way, better, or worse.

It was a slam-dunk for you, and you are going to continue to go through the grieving (denial, bargaining) for the next long while. You will also go through it again and again, as things change along the journey. I don't know how many times I've done that process now, when things get rough and I fear for what my new future holds . . . then I settle back to where I was before, or I accept the changes that I now have to live with. Low and behond, 2 - 24 months, I regain some functionality again . . . then I am on a high till the next time I go through it. It's a roller coaster, for sure.

You can't really compare yourself to anyone, cause we all seem to have our own journey. What works for some, is killer for others. All that we can do is share our experiences and try different things to see what works for us as individuals.

Cherie

Keri, you have gotten some really good advice today...I think you owe it to yourself to have all the bloodwork done to catch any mimics. I don't care whose fingers are in your brain! Get the neuro to run all the bloodwork!

However, I am one of the ones who says skip the LP, unless you have to have it!!! I agree with your neuro! Who in the world WANTS an LP!!! Not me! I did it once, no bad side effects (cause I wasn't moving afterwards unless there was a fire in the room!), my doctor did it (the only one I trusted) and I won't ever do it again! Eeeek!

I agree with Bird. Who want an LP?



It's not THE most dreaded non surgical procedure for nothin, lol.

I had mine with no guided x ray - silly me -and still it was a piece of cake. Couldn't have been better. But I know it's not always like that. I am not doing another one. I'll stay in limbo forever, thank you, if that's what I have to do.

And about limbo...while it stinks, it IS better IMHO than to be blindsided like that. 5 yrs and counting. Plenty of time to think about it.

I agree with what most of you said.

Of course, like with many things in life - sometimes we always think the grass is greener on the other side of the street. If we have dark hair - we wonder what it would be like with lighter hair. I have naturally curly hair - so I spend a ton of money every few months having it professionally straightened. Those with quick out-of-the-blue dx might think it would be better with warning...those with months to contemplate just want the answer.... There's no easy way with this.

Yes, Greenjeans - blindsided is an understatement. First the neuro said he was rushing me for an MRI - he suspected a stroke that hit my brain stem (based on results of clinical exam in his office that morning! That was shocking enough...only to get a phone call 2 hours later saying I had MS. He might well have called to say that a UFO landed on my lawn and flattened my car - it was outrageous as that. I guess it still kinda is. (I told my "story" about how I ended up "here" in the introduction thread, about three weeks ago? if you want to read it - it is pretty unreal if you ask me - then again, i lived it...)

I know the grieving process is going to continue for some time to come...one day at a time as they say (sometimes I want to shoot whoever the "they" is!)....

I'm not planning on having the LP or VEP (was considering it b/c my visual symptoms are pretty bad - but went to neuro ophthamologist on Fri - and my optic nerve isn't damaged or inflamed right now - so at least *some* good news there). The fact that - oddly enough - within 12 hours of the official dx - my symptoms actually piled on strongly and began to steamroll me - is proof enough for me. Had I not seen the neurologist the day that I did - I would've ended up back in the ER (had gone the day BEFORE I saw the neuro - and they did a CT b/c I had some double vision and vertigo) - but everything started spinning out of control - nearly literally - that looking back now it all fell into place. Weird how that happens.

I still sit here shaking my head, somewhat in disbelief, ignoring the IV pole in the corner of my room (I have TWO of these now, wondering when someone will come to retrieve them).... looking at the medical bills piling in....thinking "great, of course I get sick January 4th - just in time to meet my deductible all over again!".....and I have MS?! WTF?!

At what point does it feel real?

I thought it would've felt real the entire month that I was shooting myself up with Copaxone...but I guess not. Every time I open my refrigerator and see the box of shots (I still have a full box leftover)...shouldnt it feel real? shouldnt the iv poles solidify it? shouldnt the fact that i wake up in the middle of the night sometimes unable to feel the right side of my body make it real? or that the right side of my head has been numb since dec 22nd mean this is all really happening? or do i really just have a pinched nerve and this is some cruel joke?! (I asked the neuro that last week....he chuckled. and people say neuro's have no personality. lol)

~Keri

With any luck . . . NEVER!

For me it was when I had to make the decision to leave the workforce.

Cherie

It never feels real for me. Even with all the shots, etc. No matter how many times I've heard, "yep, you have MS" from docs.

Then again, I'm still learning to deal with this thing. I have been through the cycle of grief a lot this past year. Somehow I manage to keep going. My hubby says it's cuz I'm stubborn.

When does it feel real? For me, when I accepted MS is now a part of me....before then I was flaying in the wind while MS kept knocking me down....

For someone who isn't really religious at all, I turned to prayer big time. And at some point I had to let someone bigger than me take over.

Keri, I know that you were blindsided big time. And I have read all your threads and posts. I have advised you in several threads to not lay there, go get a second opinion. Your Dx, from every thing you say, doesn't seem right to me. You may in fact have MS. Your doc may be really really good. The first doc to ever tell me I had MS was YEARS ago and she was an internist with the worst bedside manners I ever saw. Needless to say I left her, but it took YEARS after she said this for me to be dx... So your neuro may be like her, but you still need to have all the bloodwork done....please ask him to at least do this....

I'd hate to know I was dx with an uncurable disease, when I actually had a curable one.

Peace.

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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