6-month update from Dunkempt

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

6-month update from Dunkempt

Postby dunkempt » Mon Sep 20, 2010 8:30 pm

Just posted my 6-month update in the tracking thread. Short version: I still have MS, but the last 6 months have been great.

Sorry I haven't been around TiMS much; life has requested my presence and I have spent a great deal of time on CCSVI advocacy stuff. I miss it here, though!

I wanted to say what I forgot to mention before: Acol (Nigel) was at the EuroMedic with me and my brother. I woke him 6 times in the night getting up to pee out the contrast mixture and he only ever said, "Dunkempt, are you all right?"

This thread is "Dunkempt goes to Poland": so I should say here that was the best thing Dunkempt ever did. My kids think Poland is like the North Pole and Simka is a name to conjure with.

Hi to Nigel - hope you're doing well!
dx rrms august 2009 (dx CFS spring 1988) off avonex after 3 months
treated katowice 24-25 march 2010 - best thing that ever happened - check tracking thread
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Postby sumsum » Mon Sep 20, 2010 11:14 pm

Very happy for you Denkempt! Keep on going strong :)
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-

Postby Badger » Tue Sep 21, 2010 12:28 am

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
<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March
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Postby Katie41 » Tue Sep 21, 2010 5:56 pm

So glad you're doing so well! I'm also doing very well. Had May-Thurner's stented in July and both jugulars reballooned. Left leg and foot very strong, now. Lots of energy, cognitive great - I can even understand algebra!

Becky, my daughter, and I were there with you and your brother.

The best is when you can just live life.
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Postby goody » Mon Sep 27, 2010 7:06 pm

I am researching the procedure for my wife and I have been able to find a lot of info through this site, I think it is great. My question is Are people who have had the procedure done still taking their medications?My wife is concerned about this and I'm not sure what to say . She has been on Avonex for about 18 months.
Thanks
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Postby dunkempt » Mon Sep 27, 2010 7:32 pm

Badger and Katie - good to hear from you guys! Sounds like a few of us have been having do-overs. Katie - how's your daughter?

Goody - Some people stay on, some don't. I was on Avonex until shortly before the procedure, but stopped because of a bad reaction and decided not to bother with a substitute so close to the procedure (and since then I've felt so much better I've had no incentive to go back on either).

You can probably find a better thread to discuss this one, though!

-d
dx rrms august 2009 (dx CFS spring 1988) off avonex after 3 months
treated katowice 24-25 march 2010 - best thing that ever happened - check tracking thread
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6 1/2 month doppler

Postby dunkempt » Fri Oct 15, 2010 7:18 am

Good news:
Had a 61/2 month doppler checkup at the Barrie Vascular Imaging yesterday; all clear, they said: blood flows properly on both sides, stent on the right is clear.

Bad news:
I guess in a way I was hoping more trouble would be found, which would mean that a further procedure might lead to further improvement. But I've had MS for 20+ years: some of the numbness/stiffness may just be mine to keep.

Other good news:
We were told that they were seeing continuing improvements to the more "neurological" problems well after the 6-month mark as iron depletes and lesions close up

-d
dx rrms august 2009 (dx CFS spring 1988) off avonex after 3 months
treated katowice 24-25 march 2010 - best thing that ever happened - check tracking thread
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Re: 6 1/2 month doppler

Postby Cece » Fri Oct 15, 2010 7:36 am

dunkempt wrote:Other good news:
We were told that they were seeing continuing improvements to the more "neurological" problems well after the 6-month mark as iron depletes and lesions close up

-d

That's amazing. The body heals if you let it, as much as it can! I hope this will be true for everyone.
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Who saids that?

Postby fiddler » Fri Oct 15, 2010 12:08 pm

Hi Dunkempt,
Great to hear you're doing well. By the way, who told you that last part:
We were told that they were seeing continuing improvements to the more "neurological" problems well after the 6-month mark as iron depletes and lesions close up

I was wondering if there was more than anecdotal evidence and, if only anecdotal, what it was based on. Many of us "liberati" would like to know.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby dunkempt » Fri Oct 15, 2010 12:40 pm

Quote:
We were told that they were seeing continuing improvements to the more "neurological" problems well after the 6-month mark as iron depletes and lesions close up

I was wondering if there was more than anecdotal evidence and, if only anecdotal, what it was based on. Many of us "liberati" would like to know.
...Ted


Ted -

Yeah, me too; that is the critical thing, isn't it?

This was from an experienced vascular sonographer who had trained in Italy; my understanding was that this was an observation shared by those who work with liberati, not (yet, at least) the result of formal research. So, a very hopeful thing to hear - and it matches other "informal" comments I have heard from people who should know, but not a proven fact.

But there's probably not 150 people in the that 1-year+ group yet. And probably only, what, about 500 of us in the in the 6-month+ cohort? Still, I'm glad I didn't wait...

(I actually started with, "that's the critical thing, eh?" but then I remembered not everyone here is Canadian.)

-d
dx rrms august 2009 (dx CFS spring 1988) off avonex after 3 months
treated katowice 24-25 march 2010 - best thing that ever happened - check tracking thread
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Postby bigfoot14 » Sat Oct 16, 2010 5:03 am

dunkempt wrote:I(I actually started with, "that's the critical thing, eh?" but then I remembered not everyone here is Canadian.)

-d


Hey I'm from the USA, but am fluent in Canadian....I think you'd be suprised at how many of us here are bi-lingual :P
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Postby fiddler » Sat Oct 16, 2010 7:37 am

Hey I'm from the USA, but am fluent in Canadian....I think you'd be suprised at how many of us here are bi-lingual :P

:D
Dx SPMS in 2004.  Liberated 29/04/2010.
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Postby Jugular » Sat Oct 16, 2010 8:24 am

bigfoot14 wrote:Hey I'm from the USA, but am fluent in Canadian....I think you'd be suprised at how many of us here are bi-lingual :P
I think you meant to say, "many of us here are bi-lingual eh"
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