Back from Poland

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
User avatar
wonky1
Family Elder
Posts: 113
Joined: Thu Oct 08, 2009 2:00 pm
Contact:

Post by wonky1 »

Hi LR
I'll be on 100mg of Clexane every morning for 30 days.

:D
User avatar
xia
Family Member
Posts: 38
Joined: Mon Nov 30, 2009 3:00 pm
Contact:

Post by xia »

Hi Wonky,
Brilliant news!!
So pleased you are doing well :D
Hoping to head to Poland myself, I'm just nervous thinking about it!
Take care and keep improving :D
xia
LR1234
Family Elder
Posts: 1517
Joined: Wed Feb 11, 2009 3:00 pm
Location: California
Contact:

Post by LR1234 »

Cool thanks Wonky
User avatar
Rainbolt
Family Member
Posts: 33
Joined: Thu Nov 19, 2009 3:00 pm

Post by Rainbolt »

Wow Wonky!!! Simply WOW! Sounds like it was a very easy thing for you and that you're so happy with it and that makes me very happy for you and hopeful for me someday getting checked out!!
User avatar
TaraLee
Newbie
Posts: 1
Joined: Mon Nov 30, 2009 3:00 pm
Location: Kansas
Contact:

New here But...

Post by TaraLee »

My MS sister Rain gave me a link to here showing me that someone with PPMS had success with this new treatment.
I too have PPMS and was hoping it was a treatment for us too. Seeing there is VERY little to be done for us!
I am so happy for you and hope you enjoy and ravish in the feedom you now have!
Lord please bring it the rest of us and hurry!
User avatar
wonky1
Family Elder
Posts: 113
Joined: Thu Oct 08, 2009 2:00 pm
Contact:

Post by wonky1 »

Firstly Xia, there is no need to worry about the procedure, I actually enjoyed it.

New dawn new improvement. My sense of smell and taste have returned.
I didn't realise they had gone but really noticed them coming back.
I have also started sweating.
Yesterday I thought maybe I had forgotten to put my deodorant on because there was body odour. This morning I woke with my head damp with perspiration and I realised why I was smelly yesterday.

I can now have hot showers so it's not a problem. I really tested that this morning by turning the temperature up to nearly scalding, it actually felt nice.
While I was washing my hair there was none of the sick giddy feeling I used to get moving my head around. I then tested that by making myself giddy on purpose, I did not feel sick though.
:D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D
User avatar
crocky
Family Member
Posts: 69
Joined: Wed Nov 25, 2009 3:00 pm

Fantastic News Wonky!

Post by crocky »

I have been reading your posts, I'm so happy for you. I'm hoping to go to Poland next year and your posts do much to fill me and many others with hope and confidence.
ErikaSlovakia
Family Elder
Posts: 1125
Joined: Wed Jul 29, 2009 2:00 pm
Location: Slovakia, Europe
Contact:

Post by ErikaSlovakia »

wonky1 wrote:Firstly Xia, there is no need to worry about the procedure, I actually enjoyed it.
I was already scared I was the only crazy one :D
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
User avatar
xia
Family Member
Posts: 38
Joined: Mon Nov 30, 2009 3:00 pm
Contact:

Post by xia »

Hi Wonky,
Its the thought of needles I guess!!
Great news about the hot showers!
I hope you continue to make good progress :D
xia
User avatar
Dovechick
Family Elder
Posts: 350
Joined: Sun Feb 12, 2006 3:00 pm
Location: Sussex UK
Contact:

Wonderful Wonky

Post by Dovechick »

Hi Not so Wonky M,
I'm really pleased to hear that everything went well and that we need not worry. I do hope that you see some more significant improvements in the next few weeks... Keep us in the loop.
I have been in touch with Dr Simka and he asked me to wait until the 10th until he had seen another UK patient, but in view of what you say and that he must have some idea about UK patients now I might get in touch with him again sooner.
As you said to me earlier the waiting is the worst.

PS I somehow posted this as a new topic (silly me) which I have now deleted. But it all bears saying twice in any case.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
User avatar
Nees
Getting to Know You...
Posts: 16
Joined: Tue Oct 20, 2009 2:00 pm
Location: London

Post by Nees »

A membrane patient too, kinda reassuring to know I'm not the only one! And great news that you're starting to feel better, here's hoping you go all the way!
User avatar
wonky1
Family Elder
Posts: 113
Joined: Thu Oct 08, 2009 2:00 pm
Contact:

Post by wonky1 »

And there's more.

Improvements since liberation 26 Nov' 2009


1. My bladder no longer goes into spasm. – From day 1
2. Myclonic jerks in the evening and at night have stopped - From day 3.
3. My mind is clearer and sharper - From day 4
4. I no longer choke on food or fluid, even if I rush – From day 1
5. My voice is strong and clear - From day 4
6. Today I had my first hot shower in 13 years. Steam would normally paralyse me but there were no problems – From day 4
7. I am less fatigued –From day 4
8. I have started sweating again – From day 1, really noticeable from day 4
9. My sense of taste has returned – From day 6
10. My sense of smell has returned – From day 6
11. My pride prevents me talking about a well known male M.S. problem that has something to do with lead and pencils - Big improvement from day 1, well kinda medium.

:D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D
User avatar
Dovechick
Family Elder
Posts: 350
Joined: Sun Feb 12, 2006 3:00 pm
Location: Sussex UK
Contact:

Post by Dovechick »

Better and better. I'm so pleased for you. Keep it coming.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
User avatar
Brainteaser
Family Elder
Posts: 460
Joined: Fri Jan 14, 2005 3:00 pm
Location: Melbourne, Australia

Post by Brainteaser »

XX
Last edited by Brainteaser on Sat Aug 09, 2014 5:20 pm, edited 2 times in total.
Lyon
Family Elder
Posts: 6071
Joined: Wed May 03, 2006 2:00 pm
Contact:

Post by Lyon »

.
Last edited by Lyon on Wed Nov 23, 2011 12:40 pm, edited 1 time in total.
Post Reply
  • Similar Topics
    Replies
    Views
    Last post

Return to “Chronic Cerebrospinal Venous Insufficiency (CCSVI)”