Catfreak's Recovery Notes

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

Postby mrhodes40 » Sat Oct 03, 2009 7:18 pm

There you go Cat!! On your way! Sounds sort of like my long days...

(I was tipped off; my BFF told me ignore the games you'll thank me---was she right Cat?)
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
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Advertisement

Postby Sharon » Sat Oct 03, 2009 8:22 pm

Good for you Cat! You may be a little tired tomorrow - sounds like you had a big day today. Nice to hear that things are turning around for you.

Sharon
User avatar
Sharon
Family Elder
 
Posts: 1235
Joined: Sun Nov 07, 2004 4:00 pm
Location: Colorado

Postby CNClear » Sat Oct 03, 2009 10:28 pm

Yeah, really nice to hear that! It makes me feel good for you to have a day like that...especially, since I couldn't go to my nephew's wedding in VA Beach last weekend...had to forfeit plane tickets, reservations, not to mention that we missed the best part of all...the wedding!! I was so down all week because of that...you never do get used to that kind of disappointment with the unpredictableness of MS, do you...

So, your post really did make me feel good!

Here's to better daze ahead, for us all!!

Lisa
User avatar
CNClear
Family Member
 
Posts: 96
Joined: Fri Aug 28, 2009 3:00 pm
Location: Near Atlanta, GA

Postby magoo » Sun Oct 04, 2009 8:15 am

Woooooo Hoooooo!!! Good for you! Sounds like a perfect day:) I hope you feel great today.
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: 550
Joined: Thu Sep 10, 2009 3:00 pm
Location: Charlotte, NC

Postby catfreak » Tue Oct 06, 2009 10:05 am

Hi all,

I had my INR tested yesterday and it was 5.3 yes that's right 5.3!!!

Off of the Coumadin for 2 days then 2.5mg and test again.

I am tired but not as bad as you would think. My nose has been bleeding a bit and now I know why.

On another note, I have noticed the numbness and tingling in my arms, hands, legs and feet has diminished a great deal. My headaches have lessened (except for the day my neighbor burned something that stunk really bad and I had the windows up in my house). Fatigue has lessened recently as well. I still have tinnitus in my left ear although not as bad as before the procedure. Could this be related to the high INR?

I am excited about the changes and hope for more to follow.

Take care and I will post more later.

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.
User avatar
catfreak
Family Elder
 
Posts: 791
Joined: Sun Jun 01, 2008 3:00 pm
Location: Mississippi

Postby Sharon » Tue Oct 06, 2009 10:46 am

Hey Cat - be sure to go over to the "tracking" thread and post your MS history and the CCSVI stuff.
http://www.thisisms.com/ftopict-8346.html

I am interested in your tinnitus lessening. Mine has remained the same and I have it in both ears. I know there is a difference in the type of tinnitus denoted by the sound you get to listen to. Wonder if that has anything to do with it. Mel said her tinnitus has also lessened ---- maybe you all are listening to a different "tune" than I am :wink:

Sharon
User avatar
Sharon
Family Elder
 
Posts: 1235
Joined: Sun Nov 07, 2004 4:00 pm
Location: Colorado

Postby catfreak » Tue Oct 06, 2009 11:12 am

Sharon wrote:
Mel said her tinnitus has also lessened ---- maybe you all are listening to a different "tune" than I am


Sharon, I don't think it matters what the tune is and if your like me - I am tired of it. If I could tune it to a good 60 & 70's rock station that would be better!! :lol: :lol:

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.
User avatar
catfreak
Family Elder
 
Posts: 791
Joined: Sun Jun 01, 2008 3:00 pm
Location: Mississippi

Postby Loobie » Tue Oct 06, 2009 12:12 pm

catfreak wrote:Hi all,

I had my INR tested yesterday and it was 5.3 yes that's right 5.3!!!

Off of the Coumadin for 2 days then 2.5mg and test again.

I am tired but not as bad as you would think. My nose has been bleeding a bit and now I know why.

On another note, I have noticed the numbness and tingling in my arms, hands, legs and feet has diminished a great deal. My headaches have lessened (except for the day my neighbor burned something that stunk really bad and I had the windows up in my house). Fatigue has lessened recently as well. I still have tinnitus in my left ear although not as bad as before the procedure. Could this be related to the high INR?

I am excited about the changes and hope for more to follow.

Take care and I will post more later.

Cat


Man this sounds eerily similar to some days I was having. Not having them for the last couple of days but my INR is off the charts right now to at 4.2. Lack of headaches, fatigue lessening, but still feel like MS is there sound very familiar. I have to go off the Coumadin for a day also, and then start back up at 1/2 pill a day and 1 full on alternating also!

I didn't have constant tingling in my legs, just when they were overworked, but if you read my blog, you'll notice that I have noticed that the tingling doesn't come on just from walking though the factory. I think we are having some of the same experiences! It's my left leg also, but instead of it getting weak like it used to, now my damn knee just hurts like hell. I know it's effort related (so probably MS related) because it gets better with rest, but it's nice not to have it get all weak. Killer stuff! And BTW, the last time I saw Pink Floyd, they opened up with Shine on you Crazy Diamond. It was at OSU stadium, it was about 75 and sunny and it was before this hot mess, so it's a great memory! Love me some Floyd; especially that album.

It's so good to hear things are changing in the right direction!
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 3:00 pm
Location: Dayton, Ohio USA

Postby CureIous » Tue Oct 06, 2009 1:49 pm

catfreak wrote:Hi all,

I had my INR tested yesterday and it was 5.3 yes that's right 5.3!!!

Off of the Coumadin for 2 days then 2.5mg and test again.

I am tired but not as bad as you would think. My nose has been bleeding a bit and now I know why.

On another note, I have noticed the numbness and tingling in my arms, hands, legs and feet has diminished a great deal. My headaches have lessened (except for the day my neighbor burned something that stunk really bad and I had the windows up in my house). Fatigue has lessened recently as well. I still have tinnitus in my left ear although not as bad as before the procedure. Could this be related to the high INR?

I am excited about the changes and hope for more to follow.

Take care and I will post more later.

Cat


Good grief I thought I felt bad at 3.6! My "tinn" was at it's worst at my highest INR to where even an earphone couldn't drown it out. That tells me that hopefully it will go back eventually to where it was after the surgery. I had to lower my coumadin also down to 7.5/day after 10+12 alternating. Think you need less over time to get the same bang for the buck.

Glad to hear your other reported symptoms are showing change. Can't wait for a year from now when we can all give it a thumbs up/down or sideways! Beats sitting around looking at drug brochures.

Meow.

Mark.
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
User avatar
CureIous
Family Elder
 
Posts: 1189
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA

Postby catfreak » Tue Oct 06, 2009 8:32 pm

I emailed Dr D with a followup and he said wait until I am off the Thinner to judge why I still have tiinitus. So it will be at least a month before I am done with coumadin.

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.
User avatar
catfreak
Family Elder
 
Posts: 791
Joined: Sun Jun 01, 2008 3:00 pm
Location: Mississippi

Postby CureIous » Tue Oct 06, 2009 9:38 pm

catfreak wrote:I emailed Dr D with a followup and he said wait until I am off the Thinner to judge why I still have tiinitus. So it will be at least a month before I am done with coumadin.

Cat


Yeah, it's easy to tell people "be patient" lol. That's why we are called patients!

I'm wondering if the increased reflux leads to Meniere's type symptoms.

I get my last INR report tomorrow before heading up. Cannot BELIEVE how fast the last 2 months went by! 99.9% of it spent on TIMS! lol. :)
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
User avatar
CureIous
Family Elder
 
Posts: 1189
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA

Postby catfreak » Mon Oct 12, 2009 5:11 am

Good morning everybody,

I go today for my 8th Tysabri Infusion and to see my Neuro for the 1st time since the procedure. Can't wait to see him and here what he has to say about it all.

Will post his comments maybe tonight if I get time.

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.
User avatar
catfreak
Family Elder
 
Posts: 791
Joined: Sun Jun 01, 2008 3:00 pm
Location: Mississippi

Postby CRHInv » Mon Oct 12, 2009 9:26 am

Can't wait to hear!
Take care,
Beth
User avatar
CRHInv
Family Elder
 
Posts: 402
Joined: Sun Aug 30, 2009 3:00 pm
Location: Chandler, AZ

Postby catfreak » Tue Oct 13, 2009 7:56 pm

I went to the Dr yesterday to have my 8th Tysabri Infusion and see my Neuro. The Infusion went uneventfully but I do feel really tired today from the Tysabri.

I had taken the notes Joan aka Cheerleader took at the Symposium to my Neuro last month and left it for him to read before my next visit.

The nurse practictioner came in and she had never heard of CCSVI so I wondered if the Dr has a chance to read it. Well he came in and said how was your trip out west with a smile on his face. He had read it all and was conservatily excited.

All my testing, you know the kind of test like strength and walking and balance were very good. He wanted to know when I go back and he wants to know how that goes, I am going to get the records to him of all of this. He seemed excited to have the only patient around to have the testing and procedure. I don't see him sending patients to Stanford yet but in time he will see the light because he was very interested.

So I feel a slight victory in the CCSVI and Neuro connection!!

Better days ahead,

Oh I forgot to say my INR was 1.3. It was 5.3 a week ago, this is some hard stuff to keep in balance. More changes now it's 2.5 and 3.5 alternating days.

Cat

We explianed to him the whole enchalada
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.
User avatar
catfreak
Family Elder
 
Posts: 791
Joined: Sun Jun 01, 2008 3:00 pm
Location: Mississippi

Postby Rokkit » Tue Oct 13, 2009 9:20 pm

Wow that's really cool your neuro was open and interested.

Glad you are doing well!
Rokkit
Family Elder
 
Posts: 669
Joined: Tue May 19, 2009 3:00 pm

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users