Hello I'm Island girl

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

Hello I'm Island girl

Postby Islandgirl » Thu Jun 11, 2009 5:07 pm

Hello, my name is Islandgirl I am scheduled to have the CCVIS venous MRI and possible surgery July 7th and 8th. I feel very good about my decision to have surgery, if I have jugular blockages. I want to thank mrhodes-40 for all her help and generosity in time and phone calls explaining and getting me informed, up and running on this web sight. She is wonderful.

If I get the surgery, I will be sharing all my physical changes with you in the hopes that it will .add a little more information to this subject for anyone who is considering this surgery option.

As for my condition, I am a high functioning MS victim. I walk with a slight limp and stumble alot. I have probably had this disease for twenty-thirty years. Four years ago I had no new legions. Three months ago my latest MRIs showed 6 legions. I was on copaxone for about ten years and no other drugs. My MS doctors wanted to treat me aggressively, so they changed my medication to Re-bif, after six weeks on this drug I was a zombie and ended up with a heart difficulty (atrium fibrillation.) I did not tolerate this drug well. I am now back on copaxone and off Re-bif. My doctor said I probably had atrium fibrillations, but the re-bif exacerbated my pre-existing condition. My heart is recovering slowly.

If anyone has any questions for me, or wants more histroy I would be glad to share. Good luck to all of you. Islandgirl
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Postby mrhodes40 » Thu Jun 11, 2009 5:14 pm

There she is ---My friend!!!! :D :D :D

This lady was with me 24 years ago when I had my son explaining everything to my daughter and helping me push, this lady is one of my very best friends, I wished we had not followed each other to the gates of MS, but we did. And now to CCSVI!

I am so pleased you are here.

Welcome my friend, I use my real name on here so you can say it in your posts people here know me...
marie
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 javaneen » Thu Jun 11, 2009 5:20 pm

Hello Islandgirl and welcome! This is such a wonderful community and I am so glad to have you here sharing your experience with us. Everyone (Marie, Cheer (Jeff), Sharon and holly) have been so great with sharing their stories with the rest of us it nice to have another person willing to go through all this and tell us all about it.

I am curious about your blockage. How was it diagnosed? Where did you go for testing? Where are you scheduled for surgery?

I wish you the best of luck with everything and thank you again for sharing your experience with us.
javaneen
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Postby mrhodes40 » Thu Jun 11, 2009 5:40 pm

Island GIrl.. to reply use the reply button at the top instead of new topic, then your response will be in this thread at the bottom.
:wink:
marie
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 Sharon » Thu Jun 11, 2009 5:57 pm

Island Girl - we are so glad to welcome you to TIMS. Marie is an amazing lady - you are fortunate to have her as very best friend. We look forward to hearing from you... and, be sure to know that we will all support you as you start your CCSVI journey.

Sharon
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Postby peekaboo » Thu Jun 11, 2009 6:21 pm

DITTO Sharons post :D
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Thank you everyone for the support

Postby Islandgirl » Thu Jun 11, 2009 9:52 pm

Dear Javaneen,
I have not been tested yet. When Marie began to tell me her story about getting tested and contacting Dr Dake, I was excited but I had not been reading this web site yet and was still hesitant because I still felt pretty good. But since my Re-bif experience my condition has changed. I have massive neck and headaches etc, and I am concerned about the new lesions.

I did not want to horn in on Marie's hard work. So I just asked her what she thought. She said call his office, so I did. They said they had room on the study and to send all my records. I was shocked when Dr Dake called me three days later. He reviewed my records and said lets make an appointment. My schedule is; fly in the 6th, do the venous MRI and determine whether I have a blockage on the 7th and if blocked do the surgery on the 8th or go home.

I had just seen two neurologists and had two new MRIs. One neurologist was my long time MS doctor and the other was a well respected, well known neurologist I saw specifically for neck pain, which I have had for years (does that sound familiar) and none of my neurologist could do anything to help me but try different drugs. This doctor's diagnosis was peripherial nerve damage. After thousands of dollars, miserable tests, and some drugs he sent me back to my MS doctor.

I hope I answered your question. Islandgirl [/b][/u]
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Postby Needled » Sun Jun 14, 2009 5:30 am

Hi Islandgirl -- Welcome!! Better late than never, but I did want to say my "hello's" to you. My best friend is worth her weight in gold, and we (fortuntely for her) don't even have the common but crappy bond of MS to share. Anyway, we certainly don't have to tell you anything about Marie that you don't already know in spades. So, welcome and good luck with your appointment. We look forward to hearing from you.
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Postby Loobie » Sun Jun 14, 2009 6:51 am

And Islandgirl.....you sure do shine...... :D
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