This Is MS Multiple Sclerosis Knowledge & Support Community

As an ex CCSVI participant I have moved on to the next step of trying to overcome MS and this comes in the shape of a skydive.

All of the money raised will go to the Anne Rowling Neurology Clinic and more can be found here:

https://edinburghuni.workwithus.org/Fun ... ?page=7067

I was on Tysabri until this time last year and I stopped because I went over to Poland for CCSVI procedure. I was great for 3 months then I got worse pretty quickly and I went back on Tysabri. I am still not back to the way that I was but I have improved and hope to get better. So I would suggest st...

Does anyone know how she is getting on since her procedure?

Hi, I am due to go back to Katowice on Monday 16th November. I also had a stent placed in my Azygos vein and have been getting worse since my original procedure in March. I was great initially after my procedure and this lasted for 3-4 months, I don;t know what they will find in Poland but hope they...

Hi,

that is a shame that you are no longer feeling any benefits.

I am in a similar position and I am going back to Poland on 18th November for my check up.

I would love for them to fix me but as I have a stent I do not believe that there is much that they can do.

What a struggle, my MS journey is now a complete rollercoaster, though I fail to reach the heights that I felt after Poland. I have been very poor recently and this has prompted me to contact my MS specialist to find out about going back on TYSABRI. I am hoping that can take me back to where I was; ...

I feel so sorry for you Angela, I hope you can pull through. God bless.xxx

I had the procedure on 24th March as you can see and you may also have read my updates as well. If not I am now in a worse state than I was before Poland but I have not given up, from what I have been reading on May-Thurner Syndrome it does sound possible that is what I now have. My left leg is very...

Hi, I was in Poland at the same time as you, 23/24th March. Great to hear the good news of your continued improvements. I was good until recently and I am due to start LDN today to try to sort the problem. Hopefully it will work and I can be back to the way I was after Poland. All the best :D :D :D

I had great improvements after the procedure and I was looking forward to going on holiday to see further improvements. My walking was much smoother and I could look around me while walking, I was even told that my speach was much stronger and concise. :D :D :D You can read on the 6 months post proc...

I have voted and I seem to be the only one who has got worse. This only happened after 5 months but there may have been a number of factors which could have had an impact on this - 1 - I lossed my job. 2 - My new baby was born. 3 - I was due to move home which looked to have fallen through but is ba...

The Iliac vein - It runs somewhere near the Azygos vein and due to the increase in blow flow the body uses this as a collatoral.

I am no Dr by the way it is just what I have read.

I saw my specialist last week and he is wanting to put me back on Tysabri, I said I would like to try LDN and see what happens. He said that I can take both of them at the same time. I don't know how that works but I refused anyway, still a little sceptical about Tysabri and the possibility of havin...

I have improved since returning from holiday but I am starting LDN this week and may be going back to Poland if there is no great improvement.