Hello, WOW What a great board--now convince my wife

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

Hello, WOW What a great board--now convince my wife

Postby hoodyup » Fri Sep 18, 2009 2:56 pm

Hi, everyone. I stumbled upon this board and for the first time in years I actually am getting excited about the possibility of some improvement in my wife's MS. She was diagnosed in 2005 with relapsing remitting MS, multiple lesions and lumbar puncture confirmed the neuro's diag. Her original symptoms were blurry vision in the right eye which occured when overheated or stressed out and numbness on the left thigh. Her condition got worse over time and her balance went next, then incontinence started and a general inability to multi-task or come up with the correct words. Did I mention the PMS and constipation? They make her MS symptoms unbearable. She was forced to quit a wonderful job which she loved. About 2 years ago her feet began to get purple if she was on her feet too long. The GP she went to did not seem alarmed. She spent more and more time in bed. She now has extreme leg pain and will literally freak out if her feet are down for more than 30 seconds. Transferring from her bed to a commode or a wheelchair is a risk for a fall. She tried compression hose, but this just kept the blood down in the feet and made things worse. We have found that dairy products or things high in saturated fat will make her symptoms 10x worse. She has a doctors appointment coming up and I want her doctor to refer her to a vascular specialist for the doppler scan. She had this done in 2008, but only on her legs, and they found nothing. I'm not sure they had the latest technology at the hospital she went to. What I would like to know is:

the exact name of the test(s) she needs done
the machine needed to perform these tests
what will medicare + blue shield pay for?
is there any correlation between the leg issue and ccvi?
are there any members willing to email her privately and share their experiences with the surgery either improvements or complications?

She has had a lot of mistreatment and is wary of the medical profession. She was started on Copaxone right away at diag. but had horrible site reactions. She tried hyperbaric oxygen therapy, but it made her optic neuritis worse. She was hosptialized in 2006 and put on a course of steroids. They just made her bitchy and when she quit them without tapering off she felt like a zombie. The whole hospital was a a teaching hospital where she was experimented on an rediagnosed for the benefit of interns and insurance money. The failed lumbar puncture, the many missed veins in IV administering made her want to never go back. Since then he's been given all kinds of supplements by a "Lyme Literate" doctor who sees every malady known to man as a result of Lyme disease. We tried 2 months worth of oral antibiotics, with only stomach pains to show for it. We even own a Rife Resonant Light Therapy machine which makes a weird pulsating neon light show, but has yet to cure anything. This same Lyme doctor recommended heat baths to "kill the spirochetes". We drew the line here. She is unable to handle even the slightest fluctuation in temperature, I am sure these baths would have killed her. So, when I say she is skeptical and paranoid it is not without reason. I tell her--this is different. At least get the scans done. They are non-invasive. And if they show there is a blockage, getting it fixed could only help. So, here I am/we are reading this thread and I am just trying to not get my hopes up yet again....too much. Thanks, I feel better. Andrew (Sharon's husband and caregiver)
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Postby Loobie » Fri Sep 18, 2009 4:17 pm

Sounds like she's been put through the ringer. Wow has she been through it. Well all I can say is that I did it and have high hopes. I have taken no MS drugs for about 13 weeks and won't be back on them anytime soon. I just kept progressing on them so I tried this. Take some serious time and read the research thread. Most of your questions have already been addressed there. However, if your wife wants to email me, send me a private message and I'll answer anything she'd like via regular email. Click the link on the bottom of my post and she can read my personal experiences on a blog I've been keeping. Good luck man, it sounds like she is at wits end.
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Postby Jamie » Fri Sep 18, 2009 4:28 pm

Have her email me and I'll put her in touch with Mel if you like.

Early 30's woman with RRMS, tried chemo, rebif etc. Helped enormously by restoration of flow.
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Postby cheerleader » Fri Sep 18, 2009 4:41 pm

Hey Andrew.
I hate MS. Your post really got me..because I can hear your pain in watching all of this happen to your wife.
The tests/procedure are being done at Stanford, my husband is Blue Shield and was covered. Keep reading on this forum and learn more. You're right, this is different. It's about fixing something that's mechanically broken in the body. The reason it's covered by insurance is because veins that are blocked and reflux blood harm the organ they should drain. And that would be your wife's brain....

Here's the deal. Your wife has to want to do this. It will mean surgery for her, more pain, rehab and unknown gains. As healthy caretakers, it's easy for us to say "Hey! This could be it!" My husband told me at one point to leave him alone, to stop trying to get his hopes up. He said it was too hard to hope ...and even after a successful stent procedure and huge changes in how he feels and functions....I think he is still afraid of progression. He doesn't say it, but I know. That's just what MS does to you.

So...consider all of this, share with us. Lew is a good source for the scoop. Mel would be the perfect person to PM, since Jamie (her hubby) got her to Stanford. Tell your wife she's more than welcome to come on and share if she needs a place to vent.
welcome,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CureIous » Fri Sep 18, 2009 10:04 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:44 pm, edited 1 time in total.
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 LR1234 » Sat Sep 19, 2009 1:57 am

I think CCSVI is something you and your wife should definately investigate. In the meantime I would look into supplements and taking LDN...maybe this will try and help keep her stable whilst waiting for CCSVI treatment. Some have had luck with LDN others not but I think its worth a try.
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Postby mrhodes40 » Sat Sep 19, 2009 7:05 am

I sent you a PM...look in your private messages, on the left when logged in. :wink:
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 catfreak » Sat Sep 19, 2009 8:26 am

Andrew,

I sure hope your wife has a great sense of humor!! :lol: :lol: With my MS, I don't need PMS to be bitchy.... I do fine with just with MS alone.

Really, I sound just like your wife, only I am still mobile. That why I chose not to wait.

The feet issue with me started with closed in shoes. I started wearing slide on shoes or "mules". Then it went to socks. I could not stand for socks to touch the top of my feet or the front of my legs so I went to the no show socks, which still drive me crazy since they touch the top of my feet. So my next step was flip flops, which I wear almost 12 months out of the year so nothing touched the tops of my feet but the cloth straps (no plastic, can't stand the plastic flip flips) As you can see I am very picky. I am hoping that it does not get worse!

I too am ready and willing to talk with her all you need to do is PM me and I will send you my email address.

Best of luck to you both and tell her I would do the stent again if I need to.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Thanks everyone for the replies

Postby hoodyup » Sat Sep 19, 2009 12:06 pm

I showed my wife where to find this thread. I hope she will be able to make some contacts on here and get some encouragement. I know not everything is positive, but sometimes you just need someone to listen to you. I am very interested in hearing about the progress and results of people who are being the brave ones to be the first to undergo this procedure and face this damned disease head on. I have been through all ranges of emotions watching my wife's progress down this horrible road. If only we could have done something earlier...if only. But I get some encouragement knowing that there is a possibility of fixing the cause of the problem and possibly of some improvement because so far it has all been downhill. The only exception was the LDN, which has caused the leg pain to lessen a bit. I know my wife is a fighter and has the attitude of a person with a lot to live for. Sometimes I just want give up and I'm not the one suffering. I can't even imagine what it would be like to be in her shoes. I recently had a breakdown of sorts and was forced to seek counseling. I bent a pastor's ear for about an hour and a half and he told me "wow. you need a support group." I guess I succeeded in actually bumming out a man of God. I just needed to feel so not alone in dealing with this. I can't imagine how my wife feels at home all day with just the cats and her audio books. Not even DSL, just dial-up. No cable just one or two lousy TV stations that in and out all the time. I would be insane just from boredom. She is quite a survivor. I hope she will find some encouragement from those in this group. I know it has helped me already, just knowing there are others who understand. Thanks everyone. Andrew
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Postby CureIous » Sat Sep 19, 2009 1:07 pm

:)
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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