NDwannabe is IN Poland!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby ndwannabe » Tue May 25, 2010 2:10 am

hopeful2 wrote: Do you know if your hotel has air conditioning?


Just asked. No, they do not. Not sure what the weather is going to be later in the season, but for now it is rather brisk (think - "San Francisco brisk")
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Postby ndwannabe » Tue May 25, 2010 2:14 am

drbart wrote:[

have you looked at the data w/ osirix yet?

or heard any comment from the MR tech?


No and no.

The first "no" is because I brought just my 10" netbook with me, not a "full-blown" laptop (i.e - no CD drive)

The second "no" is because my tech did not speak much English. i am hoping to be able to discuss it today during the consultation. Will let ya'll know :)
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Postby ndwannabe » Tue May 25, 2010 1:29 pm

Today was the consultation with neurologist. Pretty standard questions were asked.

I should have brought my MRI brain / spinal scan (even if 3 years old), they would have added it to the file.

MRI they do focuses on the veins and not on scanning for lesions.

************************************************************

I also think I should add a few words on what to bring on what is not needed.

The previous scans are appreciated but not required

Even though the power in Poland is different (220V vs 110V), no special transformer is required - most modern devices (laptops, phone chargers, hair driers, etc.) are designed to work on either voltage. You WILL need a power outlet adapter however (the prongs are different shape)

There is Internet connection in every room and even a very weak wireless signal, but I found it easier to just connect using the cable (cables are available at front desk)

Hair driers are also available at the front desk (and not in the rooms)
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Postby hopeful2 » Tue May 25, 2010 3:42 pm

I'm following your adventure with avid interest. Really appreciate the updates, and your tips on what to bring or leave at home. Hope your Doppler testing goes well (tomorrow or whenever you've been scheduled for it). Ciao.
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Postby Billmeik » Tue May 25, 2010 4:27 pm

Just to add on power: Just because something is new doesnt mean it willl handle 120/240. You have to check on the side. I spent days when I was in italy last trying to find a razor that would work on 120 when I got home.

laptops and cameras almost all work on dual power, but that hair dryer or curling iron may not. You have to check.

So which plug system do I bring? I have a drawer full of adapters from my 2008 trip around the world. Is it that annoying french system that is all over europe with the 2 round poles?
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Postby Billmeik » Tue May 25, 2010 4:28 pm

double
Last edited by Billmeik on Wed May 26, 2010 5:46 pm, edited 1 time in total.
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Postby ndwannabe » Wed May 26, 2010 1:48 am

Billmeik wrote:
So which plug system do I bring? I have a drawer full of adapters from my 2008 trip around the world. Is it that annoying french system that is all over europe with the 2 round poles?


Yes. It is that annoying 2 round poles :)
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Postby ndwannabe » Thu May 27, 2010 9:39 am

As I was hinted that people grow uneasy without updates :) - nothing major is happening. We all had our Doppler which, as expected, did not reveal much stenosis in either of us. Two of us where sent for some blood draw (to check thyroid and lyme for those who did not have the lyme ruled out)

Went site-seeing kindly organized by Kate - wheelchairs and all.

Twiddling out thumbs until Saturday.
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Postby drbart » Fri May 28, 2010 11:35 am

ndwannabe wrote:
Billmeik wrote:
So which plug system do I bring? I have a drawer full of adapters from my 2008 trip around the world. Is it that annoying french system that is all over europe with the 2 round poles?


Yes. It is that annoying 2 round poles :)


you can make a USA-compatible 220V outlet strip by taking the *cheapest* outlet strip you can find (no electronics!) and replacing its plug with the simplest 2-pole thing.

all the wall transformer things i've seen are happy with this, but read the labels to make sure. ("no warranty, expressed or implied, is given...")

seems like all hairdryers have 110/220 switches, *and* the fraction of hotel rooms in yurp that don't have hair dryers is very small. my advice is don't take one with you.
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Postby ndwannabe » Fri May 28, 2010 12:55 pm

Keeping my promise to post good and bad...

* My Doppler did not show stenosis, neither it showed significant flow difference (some, but not "significant")

* My MRI showed very slight narrowings (again, not "significant")

* I was tested for Lyme and IgM came positive, but IgG - negative. Kate says I have Lyme. I am not sure though.

Quoting from the web-source :
Patients who are positive by IgM but not IgG should have the test repeated a few weeks later if they remain ill. If they are still positive only by IgM and have been ill longer than one month, this is likely a false positive


I have been tested for Lyme in US, was told by the doctor it was negative.

So, at this point I honestly do not know what to expect if anything. Am I truly positive for Lyme or is it a false positive? I definitely have been sick longer than one month.

There are no significant indicators that I have any stenosis.

I still decided to go for venography (the "gold standard" and all), though my hopes are quickly fading.

The procedure is tomorrow.
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Postby drbart » Fri May 28, 2010 2:32 pm

ndwannabe wrote:There are no significant indicators that I have any stenosis.

I still decided to go for venography (the "gold standard" and all), though my hopes are quickly fading.

The procedure is tomorrow.


so many times we hear of stuff found during venography not shown by any of the external diagnostics.

"MS patients should be assumed to have CCSVI unless proved otherwise". the only proof is what you'll be doing tomorrow .. and even then, it's not clear we know how to find everything.
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Postby happydance » Fri May 28, 2010 3:12 pm

Hi ndwannabe,

I've attached a link on Wendy Struek's blog.

http://for-greet.squarespace.com/journal/2010/4/10/the-liberation-treatment-changed-my-life-wendy-stureks-incre.html

Wendy had some mild crimping in her left jugular. Nothing major.

"The doctor said that the crimping was not severe, and she could wait and come back when it got worse. She said that's not why she was here." Wendy didn't want it to get worse and had the procedure with great results.

Hope this helps with your decision. Wishing you the best.

Happydance
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Postby hopeful2 » Fri May 28, 2010 3:41 pm

The gold standard of doing venography would let the doc know what's going on in your veins. If that's what you wanted to begin with, and there's nothing that contraindicates doing venography, why not "stay the course"? Sending good thoughts your way. And a big hug.
Last edited by hopeful2 on Fri May 28, 2010 9:35 pm, edited 1 time in total.
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Postby Billmeik » Fri May 28, 2010 7:32 pm

ya this has got me worried, finding nothing. I agree with drbart

"MS patients should be assumed to have CCSVI unless proved otherwise"

hope tomorrow goes well
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Postby drbart » Fri May 28, 2010 9:15 pm

Billmeik wrote:ya this has got me worried, finding nothing. I agree with drbart

"MS patients should be assumed to have CCSVI unless proved otherwise"


apologies to drsclafani for neglecting attribution.
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