mtf goes to Poland

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

mtf goes to Poland

Postby mtf » Fri Jun 04, 2010 10:32 am

My time to go to Poland. I think this group deserves to be informed about the outcome of my trip and the attempt to improve my health . As all the others who went for treatment and the ones that are waiting to go, I had many doubts . Not any more, I must say. At the moment I haven’t any other options, I have 20 years of MS, SPMS and disability around EDSS 7,5. It means I have nothing to loose ...
So, here I go on Sunday to Poland. Looking forward to see Johnson and skincoll and all the others....When I came back I'll tell you all what happend.
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Postby 1_sindy » Fri Jun 04, 2010 10:36 am

Best of luck to you Mtf we are wishing you well and a safe trip.
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Postby Mutley » Fri Jun 04, 2010 11:38 am

Good luck mtf, we're with you all the way!
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby Trish317 » Fri Jun 04, 2010 12:38 pm

Sending you prayers and good thoughts....
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Postby skincoll » Sat Jun 05, 2010 7:14 am

Vejo você na noite de segunda-feira no bar do hotel.
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Postby Algis » Sat Jun 05, 2010 7:19 am

Best of wishes mtf : I'll have a particular follow on you because I also am SPMS 8.5

Keep us informed please :)

Be well!!
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Postby mtf » Sat Jun 05, 2010 7:38 am

Thank you to you all!
Just bought a polish dic.

I'll be at the bar!
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Postby skincoll » Sat Jun 05, 2010 7:53 am

mtf wrote:Thank you to you all!
Just bought a polish dic.

I'll be at the bar!


It's hard to pronounce properly. For me anyway. I am a teacher and I have a few Polish students who I've been tapping up for useful phrases - they have generally found my best efforts hilarious!
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Postby mtf » Sun Jun 13, 2010 6:27 am

Katowice 7&8 June
Hi people,
As promised this is my report after coming back home. Sorry for not write something before, but I didn’t take my laptop with me and my travel back home (to Lisbon) was not easy (between lost flight connection and delays I arrived well and safe). As I know all of you that are waiting for the procedure (like I was) want to know news about us the “liberated ones”, here it is:
7th of June
Eye examination (100% ok, well I’ve never had MS problems with my eyes anyway) in the morning and MRI in the afternoon (bingo! Stenosis in both jugulars)
8th of June
Doppler in the morning (confirmed the stenosis in my neck and that my azigos vein was ok) and all day waiting for the procedure which happened around 4pm.
I didn´t feel any improvements after the procedure as some of the others felt. Today I feel a little bit less fatigued, a little bit less spasticity and my breath and talk a little better. That’s all! I’m still in my wheelchair and have all the other MS crap.
As I have been told and because I have SPMS now, 20 years of MS, I can wait for stop progressing (3 to 6 months). But for you all, I’ll report back in 1 month.
Now, about the people in Poland:
-Great! Euromedic was very well organized!!
-MS friends (specially Johnson and Skincoll) were just great and I’ve spend all those days with them so well.
-I have to say that Euromedic team treat at least 18 people per week. About 400-500 people since they have started last year.
-There were people from all around the world (half of them were from Canada)
-The skybar! Great!!!!!!!

My final thoughts:
I’m really, really afraid of re-stenosis of my veins. I had just ballooning and no stents (in my group of 6 people only one had to put a stent) although I was prepared to have stents if needed. Let’s see.....
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Postby JoyIsMyStrength » Sun Jun 13, 2010 1:39 pm

Welcome back! Please don't be discouraged, many people see improvements gradually as I'm sure you know. Get plenty of rest and allow your body to adjust. Sounds like you had a great trip.

Pam
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Postby Richardk » Sun Jun 13, 2010 9:41 pm

Congratulations mtf on your trip, and I wish you the best possible outcome..

I just had the passing thought of how similar the individual stories of our trips from all parts of the world to Poland resembles Chaucer's Canterbury Tales... we each have our own unique tale to tell in our pilgrim's trip to Katowice, the new Canterbury, in our search for redemption...maybe some budding writer can make something of it....
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Postby mtf » Mon Jun 14, 2010 3:20 am

I know I said I'll report in 1 month....but today I felt so much better that I have to tell you guys. Less spasticity on my legs. If I could (and I can't) I would jump like that lady in the video!
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mtf

Postby aliyalex » Mon Jun 14, 2010 7:50 am

there might be a jump in you yet. we won't rule anything out. :D :D :D
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