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Hi [quote I have june 8 but I have to figure out if Im going to fly all the way over there for a false negative in the imaging. Zamboni said mrv's are the worse in that new talk...]

I also worry about going all the way there without evidence first, but from what I understand Dr. K does doplar and MRV etc. and then does the procedure if necessary, but I haven't really heard of anyone with a positive dx of MS not having something found when they go to Poland. Also, I was told not to waste money on tests here when they do their own anyway. I already have flight arrangements made, just hope the volcano cooperates! I have been reading the posts here about dr. K and it sounds like everyone that has seen him has had a positive experience?

shoot see, my ms is acting up, this is a new format for me so I don't even think I did that last post properly

It was supposed to start quoting Billmeik and then go on with my questions and worries but I'm trusting we're all well versed in MS typos etc to get the drift.

I would like to hear from anyone who has seen dr. K though, and what their experience was like.

I think you will find everyone who has been has positive things to say about Kostecki. I had the procedure and it was fine. But the day after I started bleeding late at night (amazingly a sneeze set it off). My friend phoned and Kostecki was there in minutes, literally. Definitely one of the good guys in my mind. I would say Katherine is equally helpful and reliable.

By the by, can I say I am glad to see someone calling themselves Brenda. Modern girls seem to call themselves Beth or Liz. I've always liked Brenda.

@AMcG LOL actually Brenda was my dad's doing, but I like it I have 2 other friends with the same birthday, different years, all with MS so we were almost wondering if we should looking numerology LOL.

Ty for answering my post. I have confidence in the doctors in Poland and Dr. K, I just fret over having a doplar last week in BC that said I didn't have CCSVI, although the Azygos wasn't scanned. I decided as I said not to spend more money on having the MRV since I wanted to go to Poland anyway and they do their own tests. I did allow for days on either side of that week to enjoy Poland and in case the volcano caused delays with our flight, so now you will have to tutor us in key polish phrases eh?

Hi Brenda,


When do you go?

Caraboo

Hi Caraboo (you must be a canadian like me LOL) I am scheduled for June 8 for tests

Hi Brenda,


Thats great, im from scotland. Liverbird from this forum asked about the name. Its a name my hubby has called me since we were 15yrs old. my name is Karen. Great you are going in June, best of luck. I go on 23rd May to same dr. First time posting it because I didnt want to jinx it. cant wait, yee ha.

Caraboo

Hi Karen ok now caraboo makes sense LOL. Please keep us posted as to how things go. I'm not nervous about the trip, Dr. K, the procedure, just that I don't have proof of CCSVI before going to Europe for the first time! We took a few extra days and hope to see a bit of Poland at least, then next time we will make a longer trip of it.

Most of my anxiety today is from the doctors here, trying to get things done, trying to get my gp to sit still and stop talking long enough to hear a simple word! phew.....ok, Now I'll do the zen thing...ommmm

Hi Brenda,



Like you i have not been tested. Will try to see some of Poland, but im looking forward to the rest. Family and friends are looking after my nine year old daughter, i will really miss her but as i say the rest will be good. Give me tardis and take me two weeks forward.

Take care

Karen

Hi Brenda,

You wrote that you had Doppler in BC. Did Dr. Cooperberg at False Creek do it? He is a skeptic, but he does know the Simka protocol, and found my IJV and thyroid vein issues. Generally azygos is not scanned with Doppler, I don't think, though it appears that Dr. Simka does. I would not bother with any operator not trained by Simka or Zamboni.

I feel that if one has MS, the likelihood of having CCSVI is probably pretty good.

By the way, I think it is so cool that you married your high school sweetheart, caraboo. My luck was different.

Interesting Johnson, I appeared to have clear jugulars to Dr. C, but yet I have all the symptoms, wooshing sounds in ears, light headedness like it will pop off and many others. But, he said I also had thyroid issues. Someone else I read a thread on said her husband had the same results. I have been tested for thyroid more than once, with good results. As a matter of fact I'm going again for blood work on monday. It's extreemly common where I come from though and my old GP automatically sent his female patients for testing.
Anyway, I was pretty worried about that part and then did some research on my own until I could see the dr. It seems that over 50% of people my age have small lesions (which I have on each side) or even growths on their thyroids. So, I don't know, I know he's a sceptic, but I left feeling like it wasn't worth going for the MRV

Hi Jonstone,

Hubby is fantastic, started having symtoms at 16, told at 18 I had ms. My mum and dad were told when i was 16 that i had it, but doctor told them not to tell me as it might not return. Big mistake, I thought i was going off my head , running to the toilet all the time, putting samples i thinking i had uti.Managed to complete college with numbness all the time and be accepted for nursing. Then I had a major relapse and was told by my gp what do you expect with ms either though I didnt know. What a nded up not going nursing because I would have never have passed the medical. Hubby has stuck by me through thick and thin.

Caraboo

Hmm. I can't advise, Brenda. Did Dr. C say anything about collaterals from the thyroid? He seemed to find that remarkable in my exam. To me, that might be indicative of stenosis lower down. It just makes sense - the thyroid veins drain into the IJVs... (I do have dual IJV stenoses x 2)

I'm presuming that you know that you have "MS". That being said, it is, I believe, difficult to use Doppler sub-clavian, or intra-cranially, which might be where your troubles lie. Then, of course, the azygos... I am certain that Dr. Simka discovered that Livabird had two azygos veins using the Doppler. I wonder if Dr. Cooperberg was shown that protocol.

I think it was on another thread that I wrote that the only reason I had scanning done at FC was to obtain a referral to the Doc. in Victoria, who was shut down. I could "feel" that I have CCSVI.

I can't say that I regret having done the scans - I almost got treatment here, and that would have been worth it. I also have been technically denied treatment, and I intend to pursue that when I (hopefully) feel better. That $2350 would have paid for my Business Class upgrade, with change left over though, or gone towards my son's education fund.

Oh well, I went into it knowing that it was a gamble.

Follow your heart.

Thank you for your response. From the first minute I absorbed the W5 special information, it was like puzzle pieces just fell into place. It just explained so much that no one could explain outside of 'it's just the MS' as if that's an answer. I have MS hug badly, and take neurontin for it or I can't even make it through the day, this I heard is hypothesized to be a problem in the azygos. Twice it was so bad for a few minutes it felt like a hunting knife being pushed into my chest. I did have stress tests and blood work, and my heart is fine, despite the emerg doc saying 'there's no such thing as pain with MS'. I was explaining that it was the second such severe pain attack and wasn't sure it was my heart, but wondered if it was the MS. I always try to be an ambassador for MS, and I made a few feeble attempts to reason with said emerge doc, and realized it was a lost cause. again....ommmmmm LOL

hey brenda

so if Im june 8 then we'll be there at the same time. Maybe im not since I havent heard back lately. the fact false creek gave you a negative makes me feel like a wimp for worrying