Hello from Helsinki

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

Hello from Helsinki

Postby DigitalMunkey » Wed Sep 09, 2009 5:04 pm

Hello everyone
My name is Peter and both me and my wife Anu have been following developments on this forum with keen interest for about a month now. Im a Brit who moved to Finland in 1995 ad my wife is Finnish.

We found out late last year that my wife has RRMS and that she had probably been having symptoms for around 9 years. She suffers from Severe heat intolerance, bladder issues as well as mild mobility problems.

We have spent a lot of time coming to terms with this shadow hanging over us and are much stronger as a couple as a result.

The CCSVI revelation is the hope we have been looking for and we plan to pursue this path vigorously. My wife is lucky in so far as that she works for a medical company here in Helsinki and so she is covered by a full company medical plan.

She will see the company doctor tomorrow as a first step. We both know that the doctor will be unaware of CCSVI but my wife is just going simply to get an appointment for a scan. This is why Im posting.

If you could give some advice on what to ask the doctor for we would be very grateful. We have read the presentation given by Marian Simka given at the symposium a couple of days ago in Italy which suggest that sonography is the way to go for the diagnosis of CCSVI. Is sonography the same as Ultrasound?

What kind of specialist does my wife need to see after initial contact with her doctor?

Can you recommend any mateirals my wife could take with her when she visits doctors or specialists that will help them get to grips with understanding CCSVI and CCSVI role in MS?

I have noticed a fellow from my neck of the woods posting in this forum who goes by the name Ernst. Does anyone know how I can get in touch with him?

Thank you all kindly fr any help or advice you might offer.

Keep the faith
peter
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Postby bestadmom » Wed Sep 09, 2009 5:40 pm

Hi DigitalMunkey,

Now that you are a registered user and not lurking anymore, you can search on different topics to find some of the answers you are looking for. Also, you can now send private messages to other members. If you click on Messages at the top of the page, you can send one to Ernst. He'll get an email notification of a private message waiting for him.

As I watch our President speak about health care reform in the US, I am envious of the coverage you and your wife have. You are lucky to use it to your advantage.

Michelle
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Postby catfreak » Wed Sep 09, 2009 5:59 pm

Welcome to This Is MS and the CCSVI section.

I just had the procedure last week and am looking forward to better days ahead.

That search feature at the top is great. I've been a member for over a year and just now know how to use it.

Also everyone is so helpful here.

Cat
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.
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Postby CRHInv » Wed Sep 09, 2009 6:12 pm

Hey Peter, Welcome. Here is a link to a thread that might be similiar to what you are looking for...

http://www.thisisms.com/ftopict-8014-tests.html

Hope I did that right...

Beth
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Postby Ernst » Wed Sep 09, 2009 9:32 pm

Terve Peter,

Jos olet käynyt lukemassa msrossroad:ia niin löydät minut sieltä eli klikkaa tänne: http://mscrossroads.org/cgibin/YaBB.cgi ja sieltä vaikka tutkimusosioon, löydät minun viestejä ja laita minulle viesti, kun olet rekisteröitynyt foorumille.

- Erekki (minun nikki foorumilla)

ps. ollaan samassa veneessä, minun vaimolla myös ms

ps. sorry, typed this in Finnish, for Peter.
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby CureIous » Wed Sep 09, 2009 9:58 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:51 pm, edited 1 time in total.
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
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Update and thanks

Postby DigitalMunkey » Thu Sep 10, 2009 6:02 am

My wife has the appointment with a radiologist who specialises in head and neck on Monday morning :D

We have just sent email to Dr Simka in the hope of getting some guidance for the radologist, where to look, what to look for. We are really excited, whilst being realistic, that this could be the death knoll for MS.

We desperately await Dr Simka`s reply and I will post it here as soon as it arrives.


Keep the faith

Peter
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Postby turtle_fi » Thu Sep 10, 2009 12:03 pm

hello from helsinki! so nice to see more finnish people here. i'm waiting for my neurologist appointment becoming soon, and would really like to hear how it went for your wife's appointments!

i'm covered by finnish health system, so i go to helsinki university hospital for checkups. they do have good reputation generally (e.g. in finland, university hospitals do the difficult procedures typically, since private hospitals are small and not so experienced)

i'm also looking now the material to send to my neuro and if that does not hit off, i'll talk to my company doctor, maybe they could get me to some exams (doppler or mrv) to get those veins checked first.
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Postby turtle_fi » Thu Sep 10, 2009 12:35 pm

about the sonography question, maybe this wikipedia article might help: http://en.wikipedia.org/wiki/Medical_ultrasonography
to me it sounds that e.g. doppler is one method to enhance sonography.
"Diagnostic sonography (ultrasonography) is an ultrasound-based diagnostic imaging technique used to visualize subcutaneous body structures including tendons, muscles, joints, vessels and internal organs for possible pathology or lesions. "
maybe this is what is ment?[/i]
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Reply from Dr Simka

Postby DigitalMunkey » Thu Sep 10, 2009 1:36 pm

Got a reply from Dr Simka

He sent a research paper from the Italian team entitled, The value of cerebral Doppler venous haemodynamics in the assessment of multiple sclerosis. It clearly outlines the procedure for the radiologist.

I wish I knew how to make this PDF available to you all, any suggestions?


Peter



From: mariansimka@poczta.onet.pl [mailto:mariansimka@poczta.onet.pl]
Sent: 10 September 2009 20:37
To: Anu Byrne
Subject: Re: CCSVI and multiple sclerosis


Please find attached article by Zamboni's team. At the end of this paper there is description how the examination should be performed. I hope it would be helpful.
regards
Marian Simka


"Anu Byrne" napisał(a):
Dear Dr Simka,
I am 31 year old woman living in Helsinki, Finland who wasdiagnosed with RRMS less than a year ago. I have followed researchers work intoCCSVI very closely and I'm writing to you in the hope that you can offerme some advice. I have been today to my company doctor and I have secured anappointment for the radiologist this coming Monday for a doppler ultrasoundscan.
I have looked through your power point presentation given atthe Bologna symposium and found it to be very helpful and informative. I'mhoping that you can provide me with some brief instructions for theradiologist. Helpful information would include where to scan and what to scanfor. I have understood that it's rather difficult for radiologists toknow what to look for.
I understand that you are a very busy man and that theresearch is very new but I have read in numerous forums that you have been veryhelpful to other MS sufferers.
So, if you could please provide this information, I will beeternally in your debt.
Sincerely,
Anu Byrne
[url][/url][url][/url]
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Postby bestadmom » Thu Sep 10, 2009 1:51 pm

HIi

You need someone with an FTP site to put the pdf on. I think Marie has one since she is hosting Dr.Simka's power point presentation and there is a link in her post. Try sending her a private message - maybe she can post the pdf for you.
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Postby daniel » Thu Sep 10, 2009 4:16 pm

if you send the pdf to me I can make it available online. I've messaged you privately with my email address.
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Postby CureOrBust » Thu Sep 10, 2009 4:34 pm

I think the document you speak of is already linked in the following post:
http://www.thisisms.com/ftopicp-55803.html#55803

The URL for the document is: Zamboni et al 2009 The value of cerebral doppler haemodynamics in the assessment of ms
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Document

Postby DigitalMunkey » Fri Sep 11, 2009 2:29 am

Thanks for that Cureorbust


Peter
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Im spreading the word as best I can

Postby DigitalMunkey » Fri Sep 11, 2009 2:36 am

Im an active member of an online artists community. I have been posting in my Journal about CCSVI
<shortened url>

And in the community forums
<shortened url>

I was a bit surprised by one of the responses from a lady in Greece

I was diagnosed with M|S about 6 years ago, the best treatment is Avonex interferon injections. I live in Greece which is a frontrunner in new treatments for MS..a new therapy which is 5 days of in hospital IV therapy which is repeated once a year and has a 85% improvement rate- interferon has 65-70% I will be starting this therapy after the xmas holiday..the blood circulation thing doesn’t seem like a possibility as I know 100% for sure that MS is a auto immune disease which cases lesions in the brain (my largest is 5cm and I have 34) the immune system attacks itself and destroys the protective sheath on the nerves..then the nerve hardens and stops working correctly or not at all. Sclerosis means hardening in Greek! If it is a vascular problem, the MRI would show angittita..or small vessel explosins!!! Hope this helps…the best therapy is POSITIVE attitude and a Balanced HARMONY in your life.. as stress and emotional upsets create havok with MS. Painting (I have permanent close up double vision) alwyas makes me forget everything else..no pain and thru the positive approach have learned to live w/ double vision…if you see the detail in my work you won’t beleive it!!! Mind over matter/think positive/don’t feed your illness w/ stress etc.be here now, be happy=healthy! Janet

How can she be so sure that it is an auto Immune disease?


Peter
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