My wife's turn next week in Poland - am I dreaming or not?

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

Postby daniel » Mon Feb 07, 2011 11:45 am

Thanks for the update! Glad to hear everything is going well!
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Postby Ernst » Tue Apr 05, 2011 10:17 am

9 month rapport: everything is so good, and my wife has been able to do quite serious gym training. Especially her legs are responding very well for training, yesterday she was doing basic squats, with nearly 60 kg:s ( 5 reps) on her shoulder and then with 50 kg x 8 reps. Last spring this kind of exercise was not possible.
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby David1949 » Tue Apr 05, 2011 11:51 am

60kg = 132 pounds. Wow, remind me not to pick a fight with her. :-)
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Postby LR1234 » Tue Apr 05, 2011 12:02 pm

Hi Ernst,
Pleased to hear your wife is doing so well.
Could you remind me what she had treated? Is she still on blood thinners? Is she sleeping on an inclined bed? Also is she doing any special diets and taking supplements?

Thanks x
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Postby CenterOfGravity » Tue Apr 05, 2011 12:07 pm

Great news! I just looked back at othter things you posted (like the article with the picture). I am half-Finnish so I can understand that that is Finnish and a few words here and there and that's about it! Glad to hear she is doing so well, the mildness of her symptoms sounds like mind, with the addition of also having had optic neuritis several times in both eyes (Separately and together) and diplopia. Kippis!
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Postby Ernst » Tue Apr 05, 2011 10:25 pm

LR1234 wrote:Hi Ernst,
Pleased to hear your wife is doing so well.
Could you remind me what she had treated? Is she still on blood thinners? Is she sleeping on an inclined bed? Also is she doing any special diets and taking supplements?

Thanks x


Thank you,

She got her MS dx in 2006, nasty big surprise with serious symptoms (her right side of body didnt work, extreme fatique, etc). It was about 3-4 months difficult times and then her condition got better. We started best-bet-diet quite after her dx and some supplements (especially vitamin D). She also got rebif, but it wasn't good (her symptoms got worse and thrombosytes got high).
Ok, first 3 years was quite ok, with minor symptoms.. but then little by little symptoms sneaked --> more fatique, depression, "heavy legs", balance issues, spasticity, etc. Exercising became more difficult and not so enjoyable, jogging changed to walking.
In June we went to Poland and her left jugular was narrowed and fixed wigh angioplasty. The impact was incredible. (i wrote it earlier here).

After treatment we dediced to continue with best-bet-diet and I also read Terry Wahls ideas, and got some ideas from her. She also takes some supplements:
- Alpha lipoic acid (600 mg / day)
- vitamin D about 125 µg
- B-vitamins, especially B12
- omega-3
- probiots
- etc..

and exercise is very important. We decided that weight lifting is something wich could have big effect on MS. I red some trials with doing weights with MS and results were promising. (and Terry Wahls experiment was very interesting too). Weight training is quite a stimulus to muscle/brain/nerve system.. and also to circulation. We try to exercise also stamina, so there will be some intervals with weights - stamina - weights. But so far, so good.

ps. she hasnt trained with weights before, so squat results are quite impressvie after 3 months training..
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby LR1234 » Wed Apr 06, 2011 3:57 am

Cool, thanks for the detailed reply. I think its always good to know what other things people are doing at the same time.
It could well be the CCSVI procedure that has helped but also the weights/diet/supps have contributed. Whatever it is I am so glad it is working!! Keep us posted xx
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Postby Ernst » Sat Jun 25, 2011 3:55 pm

Today, its exactly one year from my wife's operation - and all the improvements she got, are still there. She had her neurology check on may, and her status was "normal", and EDSS was 0.
since operation she has been exercising quite a lot, cause she got back the joy of training. Last six months we have been on gym.. and she is getting stronger, technically good squat now over 70 kilos. I have to train harder or she will beat me someday with squatting :oops:
I am so thankful about this all.. Paolo Zamboni is genious!

Image
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby Ernst » Sat Aug 13, 2011 12:17 pm

Nearly 14 months from op and everything is fine. One more "ultimate test" was when wife went to spinning class in summer and there was very high temperature in gym.. and once again it was just fine. Before one problem was heat, she couldn't be in sauna proberly.. but since op it has been possible.

PS. we had our 10:th wedding day couple of days ago.. I FORGOT that, ooooppss. She forgived me when I made this short video:
http://www.youtube.com/watch?v=p_QCKxeQAlg
Last edited by Ernst on Sat Aug 13, 2011 2:53 pm, edited 1 time in total.
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby HappyPoet » Sat Aug 13, 2011 12:36 pm

Very, very beautiful.
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Postby cheerleader » Sat Aug 13, 2011 3:45 pm

Ernst--
So happy for you and Marja. Wonderful news!! She looks great, and I know you've been a tireless and loving support. Happy 10th anniversary to you both.
best,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CD » Sat Aug 13, 2011 5:11 pm

Thank you for sharing your CCSVI journey, for your beautiful wife. You have a beautiful family also. Loved all the videos.

Happy 10th Anniversary to you and your lovely wife. You and Marja are blessed. May she keep all her improvements forever.
CD
Where there is a will, there is a way. "HOPE"

CCSVI Procedure December 2010
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Postby ErikaSlovakia » Sun Aug 14, 2011 2:00 am

Ernst wrote:PS. we had our 10:th wedding day couple of days ago..

Happy 10th anniversary :)
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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Postby Ernst » Sun Aug 14, 2011 8:34 am

Thank you for your kind comments :) ..and true, she feels great and is such a fighter! That's also one reason, she is doing so good.
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Re:

Postby Ernst » Wed Oct 19, 2011 12:17 am

Ernst wrote:and exercise is very important. We decided that weight lifting is something wich could have big effect on MS. I red some trials with doing weights with MS and results were promising. (and Terry Wahls experiment was very interesting too). Weight training is quite a stimulus to muscle/brain/nerve system.. and also to circulation. We try to exercise also stamina, so there will be some intervals with weights - stamina - weights. But so far, so good.

ps. she hasnt trained with weights before, so squat results are quite impressvie after 3 months training..



...And still going strong, now 1 year and 4 months from procedure in Poland. Situation has been just wonderful and symptoms (fatique, weakness in her right side of body, "heavy legs", etc.) have been gone. She continues with best possible after-care and treatment: nutrition and exercise --> aerobic training (spinning) and weight training. She can do hard exercises and still getting stronger. Yesterday she squatted nearly 80 kilos and that is very, very ammazing.. after 6-8 months with weights.
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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