LIVABIRD's Poland Adventure

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

Postby Johnson » Wed Apr 28, 2010 2:49 pm

That is fantastic Liva couple! I am so, so glad for you; that you made the trip, that Liva is feeling so much better, and that you are safe at home again. Your girls must be just tickled pink, and of course, Liva's feet don't need tickling to be pink!

Continued improvements to Liva. Thank you for sharing.
My name is not really Johnson. MSed up since 1993
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Postby ndwannabe » Wed Apr 28, 2010 2:51 pm

Glad you are home!

One thought crossed my mind... the stents are made out of metal (of some sort), right? Would that amount of metal be enough to set off those security detector we must pass through in the airports?
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Postby Johnson » Wed Apr 28, 2010 2:57 pm

ndwannabe wrote:Glad you are home!

One thought crossed my mind... the stents are made out of metal (of some sort), right? Would that amount of metal be enough to set off those security detector we must pass through in the airports?


Very unlikely, as the stents are non-ferrous (non-magnetic), and the metal detectors work on magnetism. A dental bridge, or gold crown on a tooth have more metal than a stent.
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No more shots Yeah!!!

Postby livabird » Thu Apr 29, 2010 10:53 pm

Well Liva went to her GP yesterday and he was very pleased for her.
He noticed a difference right away as the last time she went she was in lots of pain. The positive attitude was very apparent.
He is very interested in CCSVI and really wants to monitor her.
He is a great GP who is very supportive and interested in what Liva has to say. He said she has taught him so much about MS.

I gave Liva her last needle in the tummy, good thing as i was running out of space for the needle :D

Live continues to do well, she is feeling good and i think she will get stronger each day.

We will continue to make updates but not as often as when we were in Poland.
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Postby livabird » Sun May 02, 2010 2:46 am

Just a quick update so that you know we are still here :D
A small set back as Liva is not feeling all that well. We are sure it is due to a bladder infection nothing to do with the treatment.
She continues to be pain free so that alone is amazing.
Her feet are still pinky white and very warm.
I bought her a walker yesterday and when she is over with this infection/bug, we will give it a go and are quite confident she can build herself up.
I think we over did it the last couple of weeks which is the danger to all because you feel so much better... it takes time and she is now resting to get her strength back...
So still very very positive...

Mr Livabird.... 8)
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Thank you

Postby capegirl » Sun May 02, 2010 4:21 am

Thank you for telling us Liva's story of her procedure. I do not post often but have been reading your updates daily. I find them very inspiring and helpful. You are a wonderful husband and support person to her. I am so glad that she is showing improvements. A wonderful story.
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Postby kevin4apenny » Sun May 02, 2010 5:50 am

To Livabird, Capegirl and Costumenational

Hi Guys. I am really crap at this site so I only pray I can find this again. So Good Liva has had improvements. I was so 'glad' to read reactoins to the GP probs people have reagarding CCSVI - MINE HAS TAKEN ME OFF HER LIST! : :cry: . Widdayado?? Only baecause I insisted on areferral for a scan. I am diag'd 2001 RR but had symptoms 37 years ago! I have been relatively well but always unable to take on stress without knowing why. Blaming myself for being lazy and a rubbish nurse - now I realise I was Fatigued. I have always had reallt bad OPTIC NEURITIS which the docs coulod never actully understand or describe althoug it is in the old Med books, I tihnk they are intimidated when they come to something they cant treat or understand
Now the extra stress, courteousy of the regrettable inertia of the Health Service, is that I probably stand a great chance of full recovery, if Zamboni is right, but now I dont even have a GP :x . I even wrote to my MP who has written to Scotland's Health Minister stating how Kuwait is doing the right thing (one of my GPs actually suggested that!)
The GPs conceded they have NOTHING to offer me but have gone into this awful reaction rather just refer me: she did and I now have it in writing that they have neither the equipment nor trainig to scan me. And apparenttly Scotland is the MS World Capital 8O
I am down for a Clinical trial but dont know when and I know I am getting worse.
I thnk I will end up going for a treatment using everything I have including selling my wee car so I could end up more depressed than ever.
Oh fear sorry for moaning..................all the best to you all

Kev
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Postby sunlounger » Sun May 02, 2010 7:45 am

thanks for the update
hope the bladder infection clears up soon
it's great to hear all the improvements :D
You might find that you’re not lost
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Postby Brynn » Sun May 02, 2010 11:42 am

Livabird- I got a bladder infection when I got back, too. I think the catheter that we are on for the procedure gets those going! Get on some antibiotice quick and get well! :D All in all, you will look back on this as a really wonderful time! Take care!

Sunlounger- I would love to hear how this trip does for you! Maybe these trips will be the charm for us! If you weren't planning to post, I would love a PM to know how you are doing after! Take care, Brynn
41 years old, dx 1998, current EDSS 6.5
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back

Postby livabird » Sat Jul 03, 2010 1:19 am

Hi All, it is Liva's hubbie, sorry for the long absence....
going to give an update in a bit


Hope you all are well
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Postby Algis » Sat Jul 03, 2010 1:38 am

Sorry if I intrude; but I've got a catheter in urinary tract for 8 months; and directly in the bladder for 18 months - and never got any infection. The urologist told me that even if it is bothersome; you must flush the bladder throughout the tube twice a day with a mix of iodine and distilled water.

Now my voiding is ok since my LDN intake (well; 6 weeks after I started), the hole in my belly is sewed, and my urinary tract is ~ok~ I just cant go to toilet when needed because I cant move much, so I use whether a diaper or an external catheter.

I hope this help :)
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