Ella's adventures in Katowice

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

Postby Vhoenecke » Sat Mar 20, 2010 2:45 pm

Thanks so much for sharing Dovechick. There is another thread that asks about improved mobility post procedure. Maybe you could respond there.

Val
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respond somewhere else

Postby Dovechick » Sat Mar 20, 2010 9:25 pm

Val, as much as I like helping people I don't have time to trawl through all the threads as I am spearheading a project in the UK, to get research started here. It is a full time, unpaid, exciting, thankless, demanding, emotional and disappointing at time, constant job... If you can find me a link to this thread I will pass on the info, alternatively pass the link to this thread onto that one and people can come and see the whole story.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby acol » Sun Mar 21, 2010 4:55 am

Michele, I like the new postscipt - 'Warrior' - very apt!
Nigel
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warrior4ms

Postby Dovechick » Sun Mar 21, 2010 7:26 am

Pleased you like it Nigel. I was trying to combat the mother image. I am a lot older than most people in our little pressure group and I was being seen as the mother figure... It made me feel old and mumsy... So this is my new image...
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby acol » Sun Mar 21, 2010 7:39 am

I know the feeling. :wink:

Perhaps I need to think of something original?
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Re: warrior4ms

Postby ErikaSlovakia » Sun Mar 21, 2010 8:09 am

Dovechick wrote:Pleased you like it Nigel. I was trying to combat the mother image. I am a lot older than most people in our little pressure group and I was being seen as the mother figure... It made me feel old and mumsy... So this is my new image...

Michelle,
I was thinking for a very long time you were something my age or may be only little bit older and I am 37 :)
Now I think you are younger than me. You can do more than I can.
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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Alot older

Postby Dovechick » Sun Mar 21, 2010 9:24 am

HI Erika, nice young woman you are... I often feel like I am only 37, unfortunately when I look in the mirror I can see that I am much older than that. I often don't say how old I am people get the wrong idea about you if they think you are past 50. (And I'm a lot past 50) but then I don't have MS or Spina Bifida... I think you are amazing yourself, you have made such a difference to so many people with your courageous visit to Poland and what you are making happen in your country...

I'm not alone trying to change things in the UK and it is hard work... but having a team of people trying to change things actually makes it a lot easier and more exciting. I could not do what I do without them.

I hope you are doing OK...
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby mags4short » Sun Mar 21, 2010 9:32 am

Hi, I am in the UK and if I can help at all just let me know. I haven't a clue what I can do but am willing to try anything.

I know that things are about to start in the UK, but fear that the rug will be pulled as soon as it gets started, so have my appointment booked for Poland in May.

Like I say just give me a shout if there is anything that I can do.

Mags x
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You can help.

Postby Dovechick » Sun Mar 21, 2010 10:03 am

Hi Mags, you can come and check us out at http://www.facebook.com/ms.ccsvi.uk or http://ms-ccsvi-uk.org our website. If you like the look of us we would love to have you... We always need researchers, people to write documents, people with some computer skills, people who are good at problem solving and coming up with ideas, we need people who are energetic (within their limits) and well motivated. We have a motto within out group WYC, WYC what you can, when you can.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby mags4short » Mon Mar 22, 2010 7:18 am

Hiya,

I am already signed up on the facebook page and signed the petition etc. I will look at the website and see what I can do.

Hopefully after May I may have more energy than I know what to do with, so will be in a better position to help also :) Well that is my hope anyway.

Keep doing what you are doing, you are an inspiration to us all.

Mags x
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Postby MaggieMae » Fri Apr 16, 2010 10:50 am

Dovechick,

Haven't heard from you on here lately. Even checked your tracking thread. How is Ella since she received the stent? Doing better, I hope.
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two reasons

Postby Dovechick » Fri Apr 16, 2010 11:30 am

There are two reasons for me not posting:
1. I don't ask Ella too many questions, and as she does not live near me it is difficult for me to say anything. If it had been a miracle cure for her as it appears to be for some other people it would be easier to say something, but any improvements she has had are small and can sometimes disappear and reappear on a daily basis.
2. Because of this I think it is better for us to wait for a couple of months to see what had changed if anything.
We must remember that Ella has had MS for 10 years +
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby costumenastional » Sat Apr 17, 2010 2:55 am

Respect.
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