I am going for it

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Postby curly » Sat Sep 12, 2009 7:34 pm

I am booked in to Cologne on 14th December. Taking the kids...might as well make it a holiday. It's so far away from Australia. Please keep me informed as I'm now nervous. How long after the lumbar puncture are you feeling good enough for sightseeing?
Diana
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Postby mtf » Sun Sep 13, 2009 4:17 am

It depends on how you feel. I had headache and I had to stay in bed for two days.

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Postby carolew » Sun Sep 13, 2009 6:15 am

What I did is do the sightseeing before the procedures. After the marrow aspiration, you can visit but after the LP, you have to take it easy for a few days. No need to be nervous but you can be excited all right!!! It will be ok.. Carole
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Postby curly » Sun Sep 13, 2009 3:41 pm

Thanks Teresa and Carole. I'm just organising the itinerary now so that helps. We'll probably be in Paris for Christmas, how cold does it get, does it snow?
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Postby carolew » Mon Sep 14, 2009 1:54 pm

Paris at XMas sounds charming! It is cold a bit with a bit of snow...not much usually...
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Postby mtf » Tue Sep 15, 2009 4:32 am

I have been in Paris several times in winter and have never had snow. Lucky I guess! It's cold in winter but you can be lucky, never know...
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Postby whyRwehere » Tue Sep 15, 2009 5:27 am

It hardly ever snows in Paris at Christmas or throughout the winter, but it can get cold. That never lasts too long though. Make sure you check out the department store windows for their Xmas decorations/animations.
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Postby curly » Tue Sep 15, 2009 3:54 pm

Thanks everyone for your help. Carole, you were the last to go...when did they ask you to pay by? They are asking for their money now but I guess it's because being so far away it's a higher chance that I'll drop out. They are right of course, if I pay now there's no changing your mind. Also, after a couple of days rest, you were back to normal? How bad was the hip aspiration?
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Postby carolew » Thu Sep 17, 2009 6:38 am

Hi Curly,
I paid on the day of the aspiration, nothing before hand but someone else told me they were asking her for a down payment as well. I don't understand, maybe they have changed their arrangements. I paid with my Visa card and had to pay an extra amount because Visa always charges them a percentage of course.
After the LP, I was stiff but good to go... yes. I gained my strength back when I started my physio a few days later, at home.
It was not so bad once the freezing had taken it's effect. The problem was that he started too fast. He gave me more xylocaine and it was fine.
You have to stay still and they really dig into your hip bone but that is the way to get to your bone marrow. I also heard that you can now get some sedation for the aspiration. This could help if one is anxious.
Good luck, it will be all right. take care all. Carole
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Postby carolew » Thu Oct 01, 2009 7:04 am

Update, week 9:
I was so concentrated on my left leg that I noted only yesterday that my diplopia (double vision) ,when I gaze to the right, is gone!!
Woohoo! it's happening... I like it...the improvement of my left leg is sustained.
Still do not have a great balance and still need my cane outside but I will take any improvement that comes along.
Take care all, Carole
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Postby carolew » Wed Oct 21, 2009 4:28 pm

update week 12:
I had a great day today. My balance is improved but not perfect. My left leg continues to respond to me better.. less tripping if any. My vision is perfect. I really hope this will last. I just feel more stable. My days are full and I am holding up. Some things are just hard to measure. Little things like if I bend down to go into the cupboard, my left ankle is not twisting and turning but holding up straight like it should. Before, I would fall to the floor.. not today!
It is very disappointing when the improvements go away.
Take care all. Carole
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Postby LoveActually » Wed Oct 21, 2009 5:28 pm

Congratulations Carolew! I'm so glad things are improving for you. :)

I had no idea about stem cell transplants and how all that works with MS until I read an MS'ers blog who recently had it done. I'm still a little confused about it all but will catch on with reading.

All the best to you.
Last edited by LoveActually on Thu Oct 22, 2009 8:13 pm, edited 1 time in total.
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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Postby carolew » Thu Oct 22, 2009 9:33 am

thanks LoveActually. I know that this treatment doesn't work for every one and is not proven but I did not want to wait another 10 years before it came to Canada.... so I went there (Germany). take care, Carole
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Postby Tony » Fri Oct 23, 2009 2:11 am

Hi Carole!

These are great news! I am located in Germany, about 1,5 hours drive from Cologne and I am thinking about going there, too. I would have some questions:

I think you've had MS for quite a long time, how long? I've had it for 15 years now and am SP. My EDSS is at about 6.5.

Are you RR or also SP and how was your condition before treatment?

@Teresa: How are you doing?

Thanks a lot to both of you for keeping us updated - this is so helpful!

Best wishes, Tony
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Postby carolew » Sun Oct 25, 2009 7:02 am

Hello Tony, I have had MS for 30 yrs and am SP now. My EDSS is 3.5 or so.
I still work full time and I want to keep it up so I went to Cologne for the SCT.
As I mentioned before, my double vision is gone and my left leg lifts off the floor now... it means less tripping. I am now 12 weeks post-procedure and things are still improving. I have more stamina and feel 'stable'.. hard to describe. It's the others that notice it... good for me..
Best wishes to you too. Carole
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