This Is MS Multiple Sclerosis Community: Knowledge & Support

Scheduled a consult on Oct 1st with a doctor named Razavi in Orange CA.
Info from his site:

Dr. Razavi specializes in image-guided therapy for cancer and endovascular treatment of vascular disease including carotid artery stent placement. Before moving to Southern California, he was an Associate Professor of Interventional Radiology at the Stanford University Medical Center and the Director of the fellowship program. He had also served as the Acting Chief of Interventional Radiology at Stanford University Hospital.

I was so happy to see he is provider on my insurance.
I imagine he will be open to listening about CCSVI and may even know Dr Dake and all the work and research..idk...Hope this is a good start, I just want to be pro-active before I get any worse.
Going to print out all I can on CCSVI and take it with me.

Just want to say thanks to all the people here who post all this wonderful information

Good luck!! That's great news, as you say if he knows Dr. Dake all the better!

Terrific, Sew! That's quite a resume.
Found this...might be of importance....


If he is director of clinical trials and research, he may spark to the unique nature of CCSVI...
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

OOOooooo!! that's a good one! great find

I can't wait to hear what happens next on this angle of the story. I am very ready for someone besides Dr Dake to start being open to treatment so we can hear some other feedback from others all over.

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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

Great news! Wow, that is not long now. Good Luck.

Cat

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Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.

Thanks! I will definitely post on how it goes.

Cheer: that's awesome~You sure do have a gift of finding great info!

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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

...AND AFTER ?? ANITHING ELSE??
Today is october the 22...

I did do a follow up, but started another thread I 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! Rolling Eyes 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
~~~~~~~~~

I had my LP which was no problem. After the initial 24 hours in bed, I still couldn't be upright at all though without immense pain in my head. Husband & I didn't want to pay 125.00 for ER visit so I waited 3 more days in bed then finally had to go in for the blood patch. It HURT like crazy! But at least I could be upright and get back to work.

Went to my Neuro appt. and he said the LP was good so I am in limbo still...I wish I could be happy with no dx as hubby wants me to be..
I am upset without the dx because I feel like I will not be able to get into any of the trails and not start any meds that may help. Neuro wants me back in 4 months to see where we're at...so idk..I guess I will get another mri etc. then..
I think I'm going to make another appt. with this vascular doctor and see if he will do the testing w/o the diagnosis. I"m not sure why he wanted me to get that first. I feel a bit lost in the process and wonder if I should just try another vascular doctor? I may just wait til I save enough money to get up to Dr Dake. Sorry to ramble & sorry I did not update in the original post. thanks

We all understand and feel for you that's for sure. The no-mans-land is the opening salvo for this disease, fairly taunting one with thoughts of maybe so maybe not. Neuro's work at a snails pace, and with diseases like MS they aren't exactly in a drastic rush.

A lot has changed though in just the 6 years since my first episode, as they are recommending, as far as I know, to start the MS drugs sooner than the "official clinical dx". I know it's scary hearing all the reality of it being spoken to you, but you have one great thing going for you right now, and that is TIME. IF you get the dx, and of course they wouldn't be doing all that testing unless there was a high degree of suspicion, by then this paradigm will be even more advanced, there will be more knowledge, and possibly even more avenues to explore besides the journey to Stanford. Plus you will get the benefits of all those preceding you, as I benefitted from those before me. Sure, I wish it was all around 5 years ago, and others wish it was around 20 years ago, but it's here and we are on the cutting edge, and are way ahead of the curve on this one.

There is hope on the horizon, 5 years ago there was just an alphabet soup of drugs to pick from and not much else. Now thanks to our brave in-house pioneers who started this all sight unseen, and the efforts of our Italian brethren, we can step forward and start feeling proactive and get a sense we are hitting this thing head-on, instead of watching and waiting for the other shoe to drop.

Plus we are here for you and everyone here gets exactly where you are coming from.

Mark.

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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

Sew...
Time for some motherly advice. Mark's right, this research is not going away. If you do, someday, get an MS diagnosis-we'll know even more by then. But maybe you never will...

Check out the endothelial health program I wrote up for Jeff.
http://www.facebook.com/note.php?note_id=123456602210
Live a heart healthy, happy, active life. Keep your veins (and arteries) flowing freely.

stay healthy,
momma cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

I'd do what Cheer said...it is superb advice

... then I will add that my first episode was when I was 24--I had severe vertigo and nystagmus. They didn't know if it was menieres or MS or ear infxn what--and we were students with no insurance. I got over that incident and really moved on thinking if it were MS something bad would have happened so it must have just been an inner ear infection. 6 years later I had a noticable exacerbation that resulted in the diagnosis---then I went on to still be able to jog several times a week, for at least 6 more years.

It feels really terrible in those early years even once you get the diagnosis, especially if you "what if" a lot, but if I'd have known how mild MS can be for so long I would have lived my life more in the moment, instead of being so terrified and wrapped up in the "possiblities" my mind created for me...If I'd have known what it was going to be, I could have used that time to appreciate the "today's" I had then. I advise you to seek out opportunities to learn to do things like to meditate or do self hypnosis to teach yourself to be more peaceful (and activate thereby your parasympathetic nervous system--which will be good for the endothelium)

If you would have a similar course to mine, can you imagine where things will be in 12 years? They may have dissolvable stents, or an easy arthroscopic surgery...a perfected technique that is always kind to the accessory nerve... who knows! You are indeed very fortunate....time is on your side.

_________________
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

thank you so much for your very kind replies.

I have had some bad days this week and I'm sure it came across in my post. I have just had symptoms for so long, well 5-6 years so probably nothing in ms time. Anyway friends and family just label me as a hypochondriac because doctors would never find anything wrong.

So when there was no ms diagnosis it seemed as though everyone close to me thought..
Ok so you don't have ms stop limping and lets move on!

I plan on just keeping my "stuff" to myself for now and just answer questions if they ask. I think I may have overloaded hubby and friends with all my MS and CCSVI information. Husband has an open ear for anything I want to talk about but he is very cut n' dry if you know what I mean..
The whole "limbo" thing annoys him, he does not do well with any gray areas.

I am trying my best to live healthier. Through diet and exercise and supplements that have been recommended on this site.Thanks so much for the link! I am going to print it out. I also found a yoga show thats on in the early morning that I plan to do before work. I have heard great things about meditation as well will look into that

I am lucky that my symptoms really only hit hard when I overdue it with work or cleaning. So I will do my best to ease up on those lol

Your right, with a bit of time these ccsvi treatments should be much easier to attain. I just need to be patient, but I know that my problem is the veins and that's what I need, ya know.
As "they" say "I can feel it in my veins" (sigh) I don't even know if "they" say that.... lol or if I just made that up...my brain is crazy this week.
A couple times at work I thought the clients may have questioned my sobriety because I slurred some words and I think it was really obvious.
My brain is just dim sometimes and it's so hard to keep up.

Thank you guys for understanding and being so sweet. I am addicted to this site. I just love to read all the updates/experinces on the wonderful people who have had the stents placed and can't wait to post my own tc