This Is MS Multiple Sclerosis Knowledge & Support Community

Hi all,

On the Polish forum someone tracked down the man who bought the domain and he is a businessman with no obvious connection to hospitals/doctors. It was impossible to check what/if medical facilities were involved. People suspected someone is collecting personal data using CCSVI fever. Maybe the best way to check would be to ask the Katowice docs?

thisisalex wrote:

greyman wrote: This new one (ameds) is something strange. To me it seems like a hoax. Be careful y'all!
Adam

read the previous part of this thread... it looks like its not a hoax

I was talking about this Ameds clinic which apparently is not connected to either Dr. Simka or Ludyga.
And I don't mean their suspicious web page. There's a discussion going on Polish forum and some investigations conducted which clearly show that those Ameds people want MSers' personal data for malicious use. That's the best scenario.
The worst will emerge when they start wanting money for being enrolled to some waiting lists.
I hope we are all wrong but as I said - it's very suspicious.
Rgds,
Adam

Yes, I do not doubt Cheer's friend's good intentions, but she did not actually get treated at the center she gave the address for, so the place is still in doubt. For now, anyhow.
Could I just add, that my husband had treatment in France, so Poland is not the only place in Europe offering treatment, it is just the most organised for that purpose.

I agree that nothing is to be taken for granted. But i dont think anyone would be so naive and send money. A simple application would do no harm whatsoever.

I just received the below e-mail from them, which I think is a fair and reasonable response. This may help clarify some questions, so we don't duplicate and overwhelm before they even get started. Hopefully they will release more information soon. I requested more specific info. and asked if it was ok to post here, as I'm sure anybody would be interested.

Contact them at the e-mail Eva (Ewalala) posted..

I'm just going to hang tight now and wait until I hear from them, unless of course Stanford contacts me first. In the mean time, I'm looking local as well... something has just gotta break soon for those of us waiting.

If I hear anything else I'll post.

John

>>>>>>>>>>>>>>>>>>>>>>>>>>

Hello,

Thank You for Your message.
At this stage we are reluctant to give more details regarding the medical facility in question as we are obliged by other partners to keep it confidential until all formal arrangements are finalized.
We understand that all interested patients would like to learn more about the facility, doctors, procedures, pricing, requirements, and dates.
However, our philosophy is such that we do not want to overpromise, create hopes without possibility to fulfill them, or to mislead potential patients.
The AMEDS project is being established by professionals with appropriate background, code of ethics, and determination to create a solid alternative to existing CCSVI treatment facilities.
We understand the time pressure that patients are experiencing, yet we need to make sure that we are well prepared to examine and successfully treat them.
This is why we are cautious about revealing too many details too early.

I hope You understand.

You can share this message with other patients if You feel this makes sense to You and to them.

Best regards,


Martin

cheerleader wrote:Eva...is this you? It's Joan. If this is Eva T, I can vouch for her story. Call me Eva, and maybe we can clear this up...I want to hear how you are doing!!!! Sorry for the weird greeting to this site. People are nervous about getting cheated.
(Guys, Jeff and I know Eva and her husband- he's a fabulous musician, and he checked in with Jeff when he heard about his CCSVI procedure. She is Polish born and they live here in socal. We spoke before they went over. Let's give her the benefit of the doubt)
Joan/cheer

Hi Eva!

Welcome indeed !... yesterday late evening I was reflecting on this: as others were so skeptical, but I understand the reaction.

My conclusion yesterday however was: would anyone fake wanting to promote a non-existing or scam clinic, report about their success story by treatment with Simka? I found it highly unlikely.

If a new topic starts with s.o. reporting about their success in a new clinic/new doctors - or that upon paying more one could get priority -, then I would be more careful.

I'm so happy that all of it is now resolved! And what you reported about feeling better is fantastic!

Steffi

Guys-it's best to just follow the Polish forum, collect data and wait and see on this clinic. This is all new.

I recommended Dr. Simka to Erika last year because I had met him, corresponded with him on CCSVI and because Erika lived close to him.

I still think the best method is to find interventional radiologists in your area. Then you can have follow ups at home. CCSVI treatment is not one stop shopping. You need to have your veins monitored/dopplered in case of restenosis. If you can find a doctor who lives near you this will be much easier.
Eva is Polish, has friends there, and chose to go. She was treated nicely by the new clinic. But now she and I are going to work to get LA docs involved, because she and Jeff don't want to have to go up to Stanford for check ups.
GO LOCAL!
cheer

there has been some questions in different posts directed to me. i will try to reply to them in one post. I hope i am not missing snything.

1. medicine: i have to take 100 miligrams aspirin every day for blood thinning.
2. Yes. I remember Edi and his wife waiting on the 6th to be admitted. Edi
you most likely also remeber my heated discussion with dr. Ludyga about the logistics and organization of thir clinic.
3. my husband name is Martin. Richard is the son of the lady from UK that was with me in the same room on the 5th.

cheerleader wrote: I recommended Dr. Simka to Erika last year because I had met him, corresponded with him on CCSVI and because Erika lived close to him.

cheer

Yes, people and as you see it works very well. I am very thankfull to Joan and Dr. Simka as well!
Erika

one more improvment i have forgotten to add to my list.

i sleep throughout the entire night without having have to get up to the bathroom 5 or 6 times. This is a major change, for i can finally rest. Sleeping the entire night like a baby.

another interesting thing is that i have started dreaming again. Pretty much right after the procedure. I have most wonderfull dreams again

As before i have not had a single dream in 3 years!

Ewalala, your story is very inspiring. I can't express how good it makes me feel when I hear that symptoms are diminishing or completely going away.....I looong to be liberated too!

Wishing you continued improvements.

M

Thank you so much. I m sending you too my best wishes and the best of luck with the treatment.
eva

my wife has started dreaming too! she sad, that the dreams are like a real movie now. she didn't dreamed from 2 years. urgency problem is gone too.

I am on it Cheer!

I had to wait until I had some good proof for the vascular dr's I approached in the UK.

I now have a venogram showing a blockage and all the collaterals plus a movie of the blood draining very very slowly through these collaterals and a movie after the procedure showing the blood flowing normally through the jugular after the balloon.

I have sent a couple of stills to one of the big Profs in the UK who saw me before the procedure and he is interested in seeing all the scans now (which will be in the post to him tonight)

Fingers crossed he can at least monitor me and I really hope he will be willing to see MS patients soon.

Ewalala and Edi - this is VERY interesting indeed - the urgency problem, and the dreaming!

I have exactly the same results - only - I am doing Inclined Bed Therapy, and I haven't been liberated. Are any of you by any chance doing IBT as well? Or could it be that sleeping inclined is helping us with MS, like the operation does?

christian