CCSVI and Slovakia, Europe
OMG! this is SOOOOooo my thought too..... All the way in Washington state, compared to Slovakia. We are all the same every one of us alike in ways almost as siblings...I had so much bad luck for last couple of years. I was thinking all the time, one day I would may be win a lottery. Yes, this is my lottery!
High five sister Erika!
marie
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Erika- your persistence and beautifully positive energy is bringing forth answers. I'm so glad you found us here!!!ErikaSlovakia wrote:I have good news again.
I just have received an e-mail from Dr. Franz Schelling from Austria. He has received my 2MRIs and my 2CTs. Of course he found something. He wants to discuss it with Dr. Simka in Bologna.
I had so much bad luck for last couple of years. I was thinking all the time, one day I would may be win a lottery. Yes, this is my lottery!
If somebody from Europe reads this, I repeat, that the radiologist from Slovakia found nothing and these 2 doctors found couple of problems and they are SURE!
So I am getting closer to my treatment.
Erika
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Hi Joan!cheerleader wrote: I'm so glad you found us here!!!
cheer
I am MEGA HAPPY I found you here!!!
I have more good news from Dr. Schelling. I have received second e-mail from him.
I have also another news: I went to see my "high blood pressure doctor". I have asked him to change my Vasocardin and prescribe me Lisinopril 5 mg.
No problem, so I took my first Lisinopril 5 mg today. There are 30 pills in the package. I paid 1,17 Euro, so it is cheap, of course my health insurance company paid something too.
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
- 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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You are right. I am going to do so right now.LR1234 wrote:Cool Erika! maybe you should start a Lisinopril blog in the general or regimens section x
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
- 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
Do we know the dosage that Dr Lawrence Steinman used in his trial?
Last edited by LR1234 on Fri Sep 04, 2009 10:57 am, edited 1 time in total.
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I do not know. I am scared to take more than 5 mg. My BP is OK now.LR1234 wrote:Do we know the dosage that Dr Lawrence used in his trial?
When I have low BP it is like an attack or it is an attack for sure. My fatigue gets even worse. I will see. If 5 mg is not enough I will take 10.
Erika
Last edited by ErikaSlovakia on Fri Sep 04, 2009 9:27 am, edited 1 time in total.
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
- 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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- Joined: Wed Jul 29, 2009 2:00 pm
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Yes, I understood that I am just explaining my plans and my thaughts.LR1234 wrote:Erika, I am not suggesting you take more then your dr prescribed!!!! It was just a question about what Dr lawrence used...then I remembered he tested it on mice not humans.
Do not worry.
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
- 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
- radar22
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I have to say, I read this today, from beginning to end. This is quite interesting, courageous, humorous, and sad at times for what you have to go through to get what you believe in.
This is only the end of this chapter though. I can't wait to read more. This was like a book, I couldn't put it down. I congratulate you, as others have Ditto to all their comments.
You too, are an inspiration and a pioneer
Cindy aka Radar
This is only the end of this chapter though. I can't wait to read more. This was like a book, I couldn't put it down. I congratulate you, as others have Ditto to all their comments.
You too, are an inspiration and a pioneer
Cindy aka Radar
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I plan my story with happy-end.radar22 wrote: I can't wait to read more. This was like a book, I couldn't put it down.
Cindy aka Radar
You are lucky you do not know more. Sometimes it´s a thriller.
But often comedy.
I like this part of my life, it goes well.
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
- 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
Erika,
I am so glad things are looking up for you! Just think they will be discussing your case this week!!
Cat
I am so glad things are looking up for you! Just think they will be discussing your case this week!!
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.
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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I just have received this e-mail from Dr. Schelling:
"Dear Erika,
Dr. Simka knows why I think that your MS might best be halted by repairing the valve of the left internal jugular vein.
But such a valvuloplasty has, so far as I know, not yet been performed in a jugular veins – although Prof. Leonardo Corcos pioneered the procedure in other vein and has been willing to further develop his method for internal jugular veins.
There could, however, still exist some complicating occlusion of an intracranial venous sinus, a point which Dr. Simka first wants to clarify.
Such an additional obstruction need to be excluded, and thereby can also be examined whether my suspicion of a divided Torcular Herophili (instead of the normal confluence of sinus) proves true.
In the latter case, all depends on what Dr. Simka and Prof. Corcos consider as the procedure which corrects your venous anomalies best.
As important as all this may be for furthering the correction of less well known venous predispositions to MS – any advance will demand quite a deal of good planning, motivation and skill.
May Mary most holy protect your paths!
Franz Schelling
Austria"
"Dear Erika,
Dr. Simka knows why I think that your MS might best be halted by repairing the valve of the left internal jugular vein.
But such a valvuloplasty has, so far as I know, not yet been performed in a jugular veins – although Prof. Leonardo Corcos pioneered the procedure in other vein and has been willing to further develop his method for internal jugular veins.
There could, however, still exist some complicating occlusion of an intracranial venous sinus, a point which Dr. Simka first wants to clarify.
Such an additional obstruction need to be excluded, and thereby can also be examined whether my suspicion of a divided Torcular Herophili (instead of the normal confluence of sinus) proves true.
In the latter case, all depends on what Dr. Simka and Prof. Corcos consider as the procedure which corrects your venous anomalies best.
As important as all this may be for furthering the correction of less well known venous predispositions to MS – any advance will demand quite a deal of good planning, motivation and skill.
May Mary most holy protect your paths!
Franz Schelling
Austria"
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
- 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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