2 month update

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

2 month update

Postby sofia » Thu Jul 15, 2010 11:43 pm

2 month update: I still have vertigo issues, but it is very much reduced. The vertigo issues are easier to deal with when the fatigue and the MS blanket feeling has disappeared. I still have optic nerve issues, but it is not that often and bothersome. My legs hardly ever feel weak anymore. Whatever little urgency issues I had, is gone. Symptoms get worse when I am tiered.
Unfortunately I am not one of these people that can sya they feel like they haven't got MS, but my quality of life has improoved tremendously, it has made such a huge difference to me and my family. It is huge!

I post it here as well as the tracking sticky for everybody to find it.
I am not on here as often as before, as I am getting on with my life, I have energy enough to get off my but and do things, instead of just swaping between bed and sofa all day. I am very greatful for having liberation done, it was in the nick of time, as my health had started to deteriorate very quickly. I'm not cured, but life is so much better, it is infact amazing! Better get off now to get my littleones off to preschool.
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
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Postby costumenastional » Thu Jul 15, 2010 11:51 pm

Sofia...so happy for you sweets :)
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Postby sofia » Fri Jul 16, 2010 2:23 am

Than you!
Hope you are keeping well yourself :D
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
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Postby costumenastional » Fri Jul 16, 2010 2:29 am

You never know with this crap. I am better alright, my brain is not suffering as it was pre op and this is huge. But i need more time to make sure that progression is halted. We ll be around to talk about it ;)
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good for you!

Postby joge » Fri Jul 16, 2010 3:19 am

Sofia, good for you! Congrats!

Amazing how similar your experience is with mine. Great to read your story!
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Postby Kathyj08 » Fri Jul 16, 2010 6:07 am

That's wonderful to hear!
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Postby hannakat » Fri Jul 16, 2010 7:50 am

Awesome!

Getting on with your life is the absolute best news! Live....enjoy as much as you can now. There's no reason to be on the boards when there is so much more you can do now... you lost enough time battling MS....squeeze everything you can out of feeling the improvements!
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Postby CureIous » Fri Jul 16, 2010 10:36 am

Excellent report.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby colapesce » Fri Jul 16, 2010 10:55 am

hi Sofia,

Good to hear from you. Keep well, friend!

cola x
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Postby magoo » Fri Jul 16, 2010 12:25 pm

Wonderful!!!!!!!!!!!! So happy for you :D
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby belsadie » Sun Jul 18, 2010 8:43 am

Enjoy all the improvements, no matter!!!!!!
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Postby MS_HOPE » Sun Jul 18, 2010 9:06 am

Sofia wrote: " I am not on here as often as before, as I am getting on with my life...."

YES!! That's exactly what we're all hoping for - a life where our MS symptoms are not the focus.

I'm so happy for you!
CCSVI:  Making Sense of MS
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Postby drsclafani » Sun Jul 18, 2010 9:21 am

MS_HOPE wrote:Sofia wrote: " I am not on here as often as before, as I am getting on with my life...."

YES!! That's exactly what we're all hoping for - a life where our MS symptoms are not the focus.

I'm so happy for you!


I am glad for all who have shown improvements. Wonderful.

But going on with your life should include surveillance to assure that restenosis does not result in recurrence.

So can you tell me, how you are being tested for this

doppler? MRV? clinical examinations?

how often?

Who is following your progression?

Are you compliant with followup advice?

Thanks
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Postby sofia » Sun Jul 18, 2010 11:54 am

I am glad for all who have shown improvements. Wonderful.

But going on with your life should include surveillance to assure that restenosis does not result in recurrence.

So can you tell me, how you are being tested for this

doppler? MRV? clinical examinations?

how often?

Who is following your progression?

Are you compliant with followup advice?



I do take my pradaxa and daflon every morning and every night.
I am lucky enogh to have a great GP that is keeping an eye on my bloodlevels for any side effects from the medication. I see him on regular basis, and he is doing a good job of it.

I will also continue my annual chat/examinations at the neurology department, and have yearly mri scans for ms development. Hospital was not interested in giving me any more examinations cause of my ccsvi and procedure.

I have emailed the national center of vascualr disease, they can not offer me any sort of tratment or follow-up examinations before liberation has been recognized as a standard procedure and the neurologists have given the go ahead. It can be years.

I have allready been back to Bulgaria after I started feeling worse and actually had a relaps after procedure. They gave me an apointment within a week, and I was very happy with that. :D

It is costing a bit of money, and it is inconvenient to travel to other side of Europe to have medical treatment on a regular basis. But on me it is not to bad, it is relativley close, and it is affordable, I have support network to help take care of the little ones, and I have good enoguh health to cope with traveling. I do realise it is not as easy for most MS patients.

I will contine with everything they can offere me here untill CCSVI and liberation is recognized as standard treatment, and continue traveling to Bulgaria when needed. I know I am more or less on my own here now, but I do think it will change sooner or later. With results like this they can not keep it from us for ever.

Might ask you a question or two as well if I feel the need :-) Thank you for beeing around it is great!
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
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Postby naychergirl » Thu Jul 29, 2010 12:16 pm

Sofia,

Congrats on your improvements. and I pray there will be many more as time passes. Hopefully sooner than later!

We all want to be healed after the proceedure (including myself), but sometimes it's not the case.

I just had my doppler done, and my Dr. wants me to get an MRV. I should be able to have the proceedure in a month or so. I am so done with MS.

Keep the faith sister. Healing will come!
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