A CCSVI Patient Log: All About Steve

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

Postby mormiles » Thu Mar 25, 2010 7:57 am

Within a few days of my last comment, Steve began to improve and has stayed consistently in better shape---stronger, more energy, and clearer head. Yesterday, he mowed a small yard with a push-type power mower while I was at work (against my strong discouragement). He would not have been able to do that a month ago, and frankly, I had thought he would never be able to do it again. His mood has risen a few pegs, and I'm encouraged. When he called me on the phone to announce his accomplishment, his voice was loud and full of energy like a kid who has just come in from playing outside or like an athlete after the game.

By the way, it's been almost 6 months since Steve's 3 stents were placed in his jugulars (plus one angioplasty). Dovechick and others, keep your chins up.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby kc » Thu Mar 25, 2010 8:20 am

This is awesome news. Thank you for sharing.

kc
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Postby Ruthless67 » Thu Mar 25, 2010 9:15 am

Hi There,

Loved the positive slant of your post on Steve. It's been an uphill battle for you and Steve and your not at the summit yet, but he sound like he's finally making some real progress.

I loved your statement "his voice was loud and full of energy like a kid who has just come in from playing outside" we know he's not a kid, but oh to truly feel like one again, lol!

I wish Steve and you many, many more days and years of improved health and continued exuberance for life!

Lora
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Postby Sharon » Thu Mar 25, 2010 9:27 am

Joyce - great to hear from you! Awesome news about Steve. Thanks for sharing

We should probably start thinking about a "one-year reunion thread" :D for the Stanford Stenters.
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Postby ozarkcanoer » Thu Mar 25, 2010 9:37 am

It is good to hear from people who have had the stents for a while. There is a lesson that for some of us it may take time to feel our symptoms improve. Thanks for giving us the update and another jolt of hope !

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Postby mrhodes40 » Thu Mar 25, 2010 10:34 am

I am so happy for Steve. How wonderful after the winter of cold and flu he has been through. Mowing the grass is no small feat. :D awsome! I would not attempt it myself.

And wow, 45 YEARS of MS! holy cow, I thought I was a veteran at 19....

I think a reunion thread is a nice idea :idea:
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Vhoenecke » Thu Mar 25, 2010 3:02 pm

Joyce,

Thanks so much for sharing with us. Any change for the better at a 45+ year SPMS is huge! I am so happy for you and Steve. To tell you the truth I have RRMS and the way I feel now I don't think I could cut the grass. These improvements will take a long time and be very well received. All the best to you and Steve and thanks for the continued updates.

Val
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Postby Johnnymac » Thu Mar 25, 2010 3:13 pm

Hey Joyce,

Thats great news, I hope the improvements maintain and get better!
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Postby Johnson » Thu Mar 25, 2010 10:04 pm

Excellent news, and it brings a lot of hope for SPMS and PPMS, I would think.

mrhodes40

And wow, 45 YEARS of MS! holy cow, I thought I was a veteran at 19....


I am at year 17, and I can't imagine 28 years on top of that. I have been lamenting that it has been over 1/3 of my life...

Go Steve!
My name is not really Johnson. MSed up since 1993
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Postby mormiles » Tue Mar 30, 2010 8:32 am

Thanks guys! Fortunately, Steve's MS was very slow in progression till he was middle-aged...and he didn't know he had MS until 2005...didn't know why he had urinary urgency, ED, chronic clumsiness, chronic constipation, why he was sleepy all the time, why he had increasing balance problems, nervous ticks, increasing difficulty learning and remembering, etc. He simply accepted all these symptoms as part of life and focused on working hard. I date Steve's MS back to age 10 when he spent a week in the hospital with fever, weakness, and malaise. At the time, rheumatic fever was suspected, but there was never any conclusive diagnosis. The urinary urgency started in his late teens, and the occasional ED showed up in his early twenties. The other symptoms crept in over time, but they all worsensed only very slowly until middle-age when they all began to accelerate.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby Vhoenecke » Tue Mar 30, 2010 9:36 pm

I really appreciate you keeping us all updated Joyce. Any change for the better no matter how small is a huge leap forward.

Val
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