Contact numbers and emails?

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

Postby ErikaSlovakia » Tue Dec 08, 2009 12:59 am

selkie wrote:I hate to sound impatient, but I've always been that way. Do you think Dr. Ludyga's office would mind if I called them to ask how the application form is being sent? Or should I bite my tongue a wait a couple of weeks to see if it arrives in the mail????

Sorry to be so impatient -

selkie

Hi selki!
I do not know how it works now as I was only the second, but I do not think it should take more than 2 weeks to get the papers.
Dr. Simka was using e-mails and the rest was in hospital. I think they prefer to send you the papers via e-mail.
I would not wait couple of weeks. Wait 2 and contact him again - it is only my opinion.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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what Dr. Simka sent

Postby jr » Tue Dec 08, 2009 6:56 am

hi selkie...my sister received via email the protocol for MRI and Ultra sound only...i think once candidacy is determined before going to Poland then Dr. Simka will send the application (?)...I will get more details for you...and continue to send emails...that's what we did.

stay strong.
jr
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Postby selkie » Tue Dec 08, 2009 12:11 pm

I did respond to Dr. Ludyga's email twice to ask for the application - so far nothing has come.

It's a bit disturbing with all these rumors about Stanford being stopped, Zamboni being stopped. Don't know if these things are affecting the work of Dr. Simka or not.

But I will wait a couple days and if I haven't rec'd the application, will write or call them.

Nervous, selkie
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Postby jr » Tue Dec 08, 2009 12:15 pm

hi selkie...I understand your nervousness...I haven't heard anything about Stanford and Zamboni being stopped...unless it's been posted and I've missed it...are you able to give more info?...I will look into it further and keep you posted.

JR
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Postby ErikaSlovakia » Tue Dec 08, 2009 12:17 pm

I do not know if it helps but I remember Dr. Ludyga was really extremly busy.
On the other hand I was only in contact with Dr. Simka, so I do not know how it works.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby selkie » Thu Dec 10, 2009 12:17 pm

I've sent 3 emails to Poland in response to the first email I got from Dr. Ludyga, and still haven't heard anything back or received an application. Maybe he doesn't check his email daily.

I'm wondering if I should call them and request the application?

I hate to be a pest, but I'd like to at least get the application process started!

selkie
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Postby ErikaSlovakia » Thu Dec 10, 2009 12:58 pm

Hi Selkie,
I do not know exactly how it works there now.
I was only in contact with Dr. Simka via e-mail. I remember once he was on holiday and once he took part in some conference, so I had to wait for his reply for couple of days.
Maybe that is the problem.
Maybe he receives too many e-mails. I do not know...
I hope you get an answer soon!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
ErikaSlovakia
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Postby ClaireParry » Thu Dec 10, 2009 1:06 pm

Hi Selkie,

I am also waiting for a reply to an email I sent Monday. He replied so fast to the first that I expected the same!!

May be he is on holiday or at a conference. How dare he :D

Hope we all hear soon!

Claire
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Postby selkie » Thu Dec 10, 2009 1:30 pm

That's true, Claire! I know - isn't it awful to wait! But one person I know got an appointment by calling. I was just afraid of the language barrier and not knowing for sure when I should come, still have to get passport & all that.

Maybe I should give the doctor a little more time to respond. I'm sure they are swamped. But I would say if we don't hear by Christmas, it might be better to call.

selkie
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Postby ClaireParry » Thu Dec 10, 2009 1:42 pm

I agree Selike. Let's give it a bit longer. I'm sure he'll get back and if not then definitely a phone call!!

We could go for block booking or two for one??!!

Take care

Claire
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Postby selkie » Fri Dec 11, 2009 12:24 pm

Hey Let's keep in touch Claire - if I hear, I'll let you know & if you hear can you do the same for me? I'm sure they're swamped - but I do know one fellow whose wife called and made an appt for him right away (in February), so we don't want to get too far down the list.

Have you applied for the Buffalo study to start next year?

I've done that, and also have written Stanford, but Stanford hasn't replied. Buffalo sent a questionnaire then a response saying they will be letting people know within 1-2 months if they'll be able to participate in the study due to take place (I think) in the spring.

best, selkie
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Postby Brynn » Fri Dec 11, 2009 1:36 pm

Hi Selkie and Claire, I also emailed Dr Simka this last Wednesday and have not heard back yet. I imagine that we are three of several hundred people trying to get in line! Do you know the name of the hospital they work at? I am going to wait about a week before I write again. I imagine if learning patience builds character, that we will all be very difficult to live with when this is all done! :D Why don't we all post when we hear anything so that we all get a sense of timing for a response. I think if we all hang in there it will work out fine. Take care everyone, Brynn.
41 years old, dx 1998, current EDSS 6.5
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Postby selkie » Fri Dec 11, 2009 2:15 pm

Hi Brynn, Yes, patience is hard when we've been sick so long.

I think Erika posted contacts for Dr. Simka earlier in this thread, so scroll through all her posts. (Thanks again, Erika, you have been a huge inspiration - I hope you doing okay)

I also have this:

EuroMedic (name of the clinic) in Katowice, Poland
It's on Rolna Street
18 tel 0048323
540587 (I think that's all a telephone # but the telephone # is also
on the link to the EuroMedic clinic, I'll see if I can find that again and
post it).

And I corresponded with Dr. Tomasz Ludyga
t.ludyga@poczta.fm

If you decide to call and that works to get an appointment let me know.
For some reason I'm a little nervous about doing that & let's all keep
in touch who are hoping to see Dr. Simka.

best, selkie
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Postby Brynn » Fri Dec 11, 2009 5:08 pm

Hi Selkie, thanks so much for the info. I just ran across a post from someone who is one of 25 people schedule with Poland for April. Obviously, a lot of people lining up. I guess we just keep trying! Brynn
41 years old, dx 1998, current EDSS 6.5
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Postby selkie » Fri Dec 11, 2009 7:19 pm

Then I'm buying an international calling card this weekend and calling the clinic next week. I'm 57 and don't have time to wait for the U.S. to get on board.

Thanks for the update.

selkie
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