appt today w/vascular doctor

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appt today w/vascular doctor

Postby sewwhat » Thu Oct 01, 2009 4:21 pm

Well Dr Razavi was very nice. I took my mri and he said it looks like MS to him.(I'm in limbo)

He then asked what brought us to his office? Well my husband explained everything to him better then I ever could thankfully.

He was very surprised that we knew about CCSVI and asked where I had found the information since it is all so new. I told him and he mentioned that he has worked with Dr. Dake. He recommended that I get my LP done and get the MS diagnosis and then come back to his office and we can talk more about testing and stents if need be. He also needs to look at my blood work results. I unfortunately haven't got them from neuro yet. I should have been smarter and scheduled this appt after all my ducks were in a row...I just wanted to get in there and find the problem.

So that was that.
Hubby walked me to my car and I had a complete breakdown as he
walked away...My LP is scheduled for next thurs. and I am terrified.
This is still all so new to me. I guess it just hit me walking out of the doctors office that damn it I flippin' DO have MS and its not going anywhere! :roll: lil bit of denial was lingering in my head

I'm sorry to ramble but my husband is my only real support system and he went to work..I guess I am just bummed cause I wanted to be able to schedule the tests asap and get crackin on this ya know??

Anyway LP next week, Neuro appt. the following week for the diagnosis I imagine, and then I am calling the vascular doctor back to schedule the tests. thanks
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Postby daniel » Mon Oct 05, 2009 10:24 am

It's never fun getting the diagnosis sew, I had my first attack one year ago but I'm glad that CCSVI is finally coming out of the woodwork... there's actually cause to hope now =)

BTW *love* Amélie
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Re: appt today w/vascular doctor

Postby CureIous » Mon Oct 05, 2009 10:35 am

sewwhat wrote:Well Dr Razavi was very nice. I took my mri and he said it looks like MS to him.(I'm in limbo)

He then asked what brought us to his office? Well my husband explained everything to him better then I ever could thankfully.

He was very surprised that we knew about CCSVI and asked where I had found the information since it is all so new. I told him and he mentioned that he has worked with Dr. Dake. He recommended that I get my LP done and get the MS diagnosis and then come back to his office and we can talk more about testing and stents if need be. He also needs to look at my blood work results. I unfortunately haven't got them from neuro yet. I should have been smarter and scheduled this appt after all my ducks were in a row...I just wanted to get in there and find the problem.

So that was that.
Hubby walked me to my car and I had a complete breakdown as he
walked away...My LP is scheduled for next thurs. and I am terrified.
This is still all so new to me. I guess it just hit me walking out of the doctors office that damn it I flippin' DO have MS and its not going anywhere! :roll: lil bit of denial was lingering in my head

I'm sorry to ramble but my husband is my only real support system and he went to work..I guess I am just bummed cause I wanted to be able to schedule the tests asap and get crackin on this ya know??

Anyway LP next week, Neuro appt. the following week for the diagnosis I imagine, and then I am calling the vascular doctor back to schedule the tests. thanks


You'll do fine. No, it's not fun, but it's doable. It's the first invasive procedure I ever had. Yikes! My pain management guy for my back, and my CT myelogram involved several more. You can do it. It's no picnic but you can do it.

You are lucky to have a hubby there with you for support. Just keep in mind that the MS damage is a slow accumulation over years, sometimes many years, for most people. Some faster than others, but mostly slow. Sooner the better for you of course on all this, but a few weeks/months isn't going to affect you much either way. Don't know how they are doing dx's now but when I started all of 5 years ago, getting a confirmed DX was difficult because of the guidelines requiring 2 separate and distinct flare ups. Haven't a clue what they are doing now. CIS they told me, what is that? Just means you are the proud owner of a useless acronym called Clinically Isolated Syndrome. Gee aint that swell lol. Glad I finally got the "official" dx, but seriously, it was just a switch in acronyms as the disease progressed. Made no diff to me at all physically. Mentally maybe I dunno...

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby LR1234 » Mon Oct 05, 2009 10:46 am

"and scheduled this appt after all my ducks were in a row..."

Where are you from Sew? I have not heard this expression before.

I am so suprised your neuro had heard about CCSVI. Good luck in your quest. Keep us all posted

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Postby mrhodes40 » Mon Oct 05, 2009 10:55 am

The natural history studies of MS show that people with RRMS will not get to a EDSS of 3 for about 15 years (depending on study)--3 is still really functional pretty normal no cane or anything like that, I think you are really lucky to be so early in diagnosis as this new work is coming out..it is not going to take 15 years for this!! Lucky!! :D you can even afford to wait a bit for some of the stuff to work out if you like.... like what stent is best and are some blockages better treated with open surgery. This is experimental at this point in time and a lot is not known yet.

If it were me and this is just my thought, drinks lots of water to keep your blood nice and flowing, consider safe supplements to enhance endothelial function and get plenty of exercise, all to keep your veins open nicely. You should be open to consider one of the early drugs (CRABS) as your neuro recommends to keep inflammation at bay (inflammation is damaging even in the CCSVI paradigm)

This stuff will maximize your body function until CCSVI treatment is available to you

But this guys knows of Dr Dake it will be interesting to see what he thinks when you go back with more information...can't wait to hear Sew!
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Sawdoggie » Mon Oct 05, 2009 10:58 am

The LP is not really that big of a deal. It sounded a lot worse than it actually was (at least in my opinion). For me, the worst part of the whole day was seeing "MS" written on the order. I sat there a little numb, figuratively and literally speaking, for my first couple of neuro appointments. The whole MS experience sucks to say the least. I understand the need to feel like you have to do something today as I'm right there with you!

Christian
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Postby IHateMS » Mon Oct 05, 2009 11:36 am

is the lp necessary? when i was dx. i had two lesions and an abnormal VER. my neuro recommended the lp. i asked him if the lp results would change the dx or recommended treatment...... he said no. i skipped the lp at that time.

five years later, i had an lp when i had a myelogram since the surgeon had to extract the spinal fluid before injecting other fluids.

if you have the lp, the pain is minimal...lasts mere seconds... since i had to be undressed with the hospital gown only, i looked at it as my way of telling ms to kiss my behind. :twisted:

do make sure you are hydrated, as mentioned.
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Postby Sharon » Mon Oct 05, 2009 1:48 pm

Before the LP be sure you are hydrated. Then after the LP, lay flat for eight hours and drink Coca-cola. I followed this advice and did not have the dreaded headaches.


You wrote
......all my ducks were in a row..."


LR asked where you were from 'cause he had never heard the expression. I am from Colorado and I use the expression all the time.

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Postby LR1234 » Mon Oct 05, 2009 3:07 pm

I am from England and never heard it before! It must be an American saying:)

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Postby CureIous » Mon Oct 05, 2009 3:25 pm

LR1234 wrote:I am from England and never heard it before! It must be an American saying:)

L


Here's one of a variety of origins. Just basically means to get things in proper order... Carries a sense of finality, as in once you GET all your ducks in a row, you are ready to go or do something.

"Ducks in a Row, Get/Put Your - Primitive versions of modern bowling were known many centuries ago. Pins of varied sizes and shapes were employed. Eventually they were standardized at fifteen inches in both height and circumstances. Originally called ten-pins, the equipment used in Europe was employed in the earliest American bowling saloons. The game was modified by introduction of a short, slender pin that was compared with a duck and, by extension, called them duckpins. So many people reset so many pins in rows that one who completes a task is commended as having put his 'ducks in a row.'" From "Why You Say It" by Webb Garrison.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby LR1234 » Mon Oct 05, 2009 3:40 pm

Cool thanks for the explanation Mark x
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Postby Sharon » Mon Oct 05, 2009 4:27 pm

Hey, Mark - thanks for the detail - I never really thought about where the saying came from --now I know.

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Postby sewwhat » Mon Oct 05, 2009 8:38 pm

Hi, thank you so much for the replies.

daniel - I think hearing the doc say it just hit me like a ton o bricks. I'm sure it did for all of us...but your so right there's cause for hope. I feel so lucky to have found this site, with the great people & information.
~Amélie is my favorite movie :) always cheers me up

CureIous - Thanks:) I am just so scared of needles and this one is the biggie lol I will be lucky enough to have some ativan before hand so I'm hoping I will be so mellow that it will be doable lol I am just prone to panic attacks and that's what I am fearing happens as they insert the needle!

I am not too sure on the diagnosing procedure either but neuro did say the LP was a must to confirm. I thought since I have so many lesions that I could avoid it but...no such luck. Truthfully I wanted the vascular doc to start the testing for CCSVI right away and get going but I will just stop n take a breath and see how the next appt goes. I wish I had the money available to just take off to Stanford but I will just keep saving. :) tc

LR1234 - I was born in CA but both parents are from Ireland.
I always heard my mom saying the "ducks in row" thing, among other fun sayings lol

mrhodes40 - "The natural history studies of MS show that people with RRMS will not get to a EDSS of 3 for about 15 years (depending on study)--3 is still really functional pretty normal no cane or anything like that"
Wow that puts me at ease here. I have been hearing so many horror stories from "friends" that I feel like I am in panic mode.
I have changed my diet completely, started exercising and added supplements. I do plan on starting a CRAB but need to do more research on which one to choose. That's very confusing so I have put it off..
This vascular doctor said he actually worked with Dr Dake at Stanford so that was very exciting to hear! I will definitely let you know how it goes tc n thanks for that information.


Sawdoggie - "The whole MS experience sucks to say the least." That sums it up perfectly..I so agree.
Glad to hear another LP experience was was not too bad :)

IHateMS - Yep the neuro says he needs it to give me a diagnosis.
"the pain is minimal...lasts mere seconds... since i had to be undressed with the hospital gown only, i looked at it as my way of telling ms to kiss my behind."
LOVE it! lol

Sharon - Thanks for the Coca Cola tip. I have been off soda for about two weeks now but if I "need" to have it well I will lol yum At least there's something good to look forward to on thursday :)
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Postby CureIous » Mon Oct 05, 2009 9:05 pm

I never really had an edss scale or anything. As some have intimated on here, the whole scale is basically, "are you ambulatory in a normal fashion"=good. If you are physically disabled in any way, your score goes up. If you are losing function of body parts, the score goes up.

If you are practically bed ridden from mind numbing fatigue, can barely function on an intellectual level, spend 20 minutes wandering around the house trying to remember what exactly it was you were doing, forget things at work that your boss told you not 2 minutes previous (which smacks of insubordination where I work), if you are too tired to play with your kids, go anywhere, do anything, if you are severely depressed but you cannot put a finger on any possible reason why, if you pick the same thing up 5 times and drop it 5 times because you fingers are a wee bit on the insensitive side, if you get dizzy from all the wrong positions at the wrong times, if you get frustrated on a nearly hourly basis from being unable to concentrate on ANYTHING, if your sleep leaves you waking up feeling more tired than when you went to bed, if and when all that occurs on a daily basis to varying degrees, you are considered "not that disabled". Quality of life might suck to the nth. You may tinker with suicidal thoughts on a daily basis, though not serious about it of course, but youre edss is low, so you are FINE in the eyes of the doctors and the scientific community at large.

And yet, when the above mentioned litany of misery has mitigated oh, about down to fairly background noise, nearly overnight, well that's anectdotal and all in your head.

So you get zero validation from the medical community as to what is ruining your life, and you get zero credit from anyone else as to how much your life has improved.

Go figure. So getting stents is kind of the reverse of the CIS place you are in . You're getting better, but you don't know how much and when it will happen even more. Time will tell how much BETTER you are, as opposed to MS where you got that ticky tocky little clock in your head that you KNOW is going to strike midnight sometime in the future!

:)

Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby whyRwehere » Tue Oct 06, 2009 4:11 am

I don't think the Lumbar puncture is necessary....you probably could insist that you didn't want it, but if you do have it done, insist that they investigate for Lyme Disease while they are at it.
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