Loobie update - 18 months out

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

Postby CRHInv » Sat Feb 19, 2011 7:02 pm

Oh Lew! Thanks for posting. I love it when I see all my old friends out here... Lew, Cheer, Erika. My husband and daughter want to watch a movie, so I have to go! Yes 15 months out and I can stay awake in the evening and watch a show... placebo schmebo!
Take good care,
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
User avatar
CRHInv
Family Elder
 
Posts: 402
Joined: Sun Aug 30, 2009 2:00 pm
Location: Chandler, AZ

Advertisement

Postby magoo » Sun Feb 20, 2011 7:39 am

Great to hear from you Lew!! Hope you can get that azygos checked soon. So happy your SSDI was easy and quick. Keep enjoying your life!!!
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.
User avatar
magoo
Family Elder
 
Posts: 557
Joined: Thu Sep 10, 2009 2:00 pm
Location: Charlotte, NC

Postby questor » Sun Feb 20, 2011 1:01 pm

Loobie,
Very nice to read your update, I'm sorry to hear about the weakness in your left leg, but, like you I also experience overall improvement in stamina and lower body strength from the Stanford stents. I agree that the shoulder problem related to accessory nerve impingement has been and still is a bitch to work through, I'm still trying to find the right movements to reverse atrophy in my right shoulder, and I am still not able to exercise like I used to because of this. I'm currently working with a pilates physical therapist who is teaching me how to use other muscles to do the things I used to (sort of).

As you said, hope is invaluable, I'm still on the quest for a cure, additional symptom relief, and a way to slow-down or stop neurodegeneration. I start a 6-month trial of the jellyfish protein apoaequorin as part of the MS Hope Trials tomorrow morning (why not, I didn't experience a significant improvement in brain fog or memory problems from the stents), and I anxiously watch for updates about helminths, I also keep watch for another CCSVI opportunity to participate in (JNI's CCSVI evaluation caught my eye). I got some benefit from the Stanford CCSVI procedure, but I'm not done yet, and I agree with your point and concern about the azygos.

I'm glad to hear you've got a puppy and of your quick turn-around for SSDI. My yorkipoo just had his first birthday, and is a great companion and walk instigator. And, he's smarter than I am, which is sometimes useful.

Keep healing...

Update 02/26/2011 - Stopped apoaequorin trial participation on physician advice yesterday (related to concern about calcium channel interaction with another med I currently take). Will be starting low-dose selegiline and
vinpocetine along with additional supplements to slow neurodegeneration.

--Tracy
Last edited by questor on Sat Feb 26, 2011 12:47 pm, edited 1 time in total.
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone
Former Ampyra User
Regular Botox Bladder Injections
User avatar
questor
Family Elder
 
Posts: 280
Joined: Mon May 22, 2006 2:00 pm
Location: Northern Calif Monterey Bay Area

Postby Loobie » Sun Feb 20, 2011 3:50 pm

Thanks Tracy. I sometimes think you and I were the most similar going into all of this and when I saw you post surgery, it was major deja vu. I felt as bad as you did after my first one! I'm thinking about getting imaged again by one of the docs that has done well over 500 of these now in hopes that whatever flow problems I have (if you remember, at the time, we were just looking for stenosis) can be corrected if any. I will never give up I suppose in my quest for feeling better. We just aren't made to feel like ass all the time! I am loving this puppy, but her upcoming size has my wondering what I was thinking in terms of taking her for a walk. I guess I could always call Cesar to leash train her!
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 2:00 pm
Location: Dayton, Ohio USA

Postby Rokkit » Sun Feb 20, 2011 6:50 pm

Loobie wrote:I'm thinking about getting imaged again by one of the docs that has done well over 500 of these now in hopes that whatever flow problems I have (if you remember, at the time, we were just looking for stenosis) can be corrected if any.

I've been wondering about that, too. I'm getting an ultrasound in a couple of weeks, I'll let ya know what they find.
Rokkit
Family Elder
 
Posts: 669
Joined: Tue May 19, 2009 2:00 pm

Postby walcat » Mon Feb 21, 2011 1:57 pm

Loobie - Thanks for the update! It's thanks to all you pioneers I was tested and treated for CCSVI, my life is so much better. I enjoying reading how everyone is doing. My doctor told me he's discovering it's the azygos that affect the legs. I'm now 5 mos. post.
User avatar
walcat
Family Member
 
Posts: 25
Joined: Sat Dec 12, 2009 3:00 pm
Location: Idaho, USA

Postby Loobie » Mon Feb 21, 2011 2:20 pm

The azygous affecting your legs is what I've been thinking all along. I wish I would have told Dake to just stent it anyway!
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 2:00 pm
Location: Dayton, Ohio USA

Postby Cece » Mon Feb 21, 2011 2:38 pm

walcat wrote:Loobie - Thanks for the update! It's thanks to all you pioneers I was tested and treated for CCSVI, my life is so much better. I enjoying reading how everyone is doing. My doctor told me he's discovering it's the azygos that affect the legs. I'm now 5 mos. post.

walcat, which doctor? This makes sense intuitively, since the azygos drains the spine.
Cece
Family Elder
 
Posts: 9054
Joined: Mon Jan 04, 2010 3:00 pm

Postby Rose2 » Mon Feb 21, 2011 7:10 pm

Lew,
Happy to see your update. I was also in That Group.
Dr. Dake did stent my Azygos and I have experienced great improvments.
I hope you can get your Azygos treated.
Rose2
User avatar
Rose2
Family Elder
 
Posts: 274
Joined: Sat Sep 12, 2009 2:00 pm
Location: SF area

Postby Drury » Wed Feb 23, 2011 8:44 pm

Loobie

Thank you for your update. Delighted to hear that you are doing so well.

Thank you Loobie and all the other brave souls that led the way - we are eternally grateful.

Drury
User avatar
Drury
Family Elder
 
Posts: 237
Joined: Sun Mar 28, 2010 2:00 pm

Re: Loobie update - 18 months out

Postby prairiegirl » Thu Feb 24, 2011 9:24 am

Loobie wrote:I also know that the power of HOPE is a very, very powerful thing indeed. You are doing something proactive for your disease and you're going to feel hope where you may have been hopeless before.

... so that's my 18 month update; doing pretty good, but not MS free. There is simply no 'mechanism' yet for any of us to say "yep, I know it stopped it and I'm done with MS". If there was, I'd say it, but I just have to be honest.

Great to read your update, Loobie. I agree with you about HOPE, and I think that the research and treatments for CCSVI are giving people way more reason to be hopeful and optimistic for the future. Very best to you for your future, and I also thank you and the other pioneers that "led the way" (as Drury said).
User avatar
prairiegirl
Family Elder
 
Posts: 228
Joined: Fri Feb 05, 2010 3:00 pm

Previous

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service

cron