A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Post subject: Okay... MRV here we come! Posted: Tue Jun 09, 2009 11:45 am |
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After much discussion over the past couple of weeks we've decided to look into all of this.
I've emailed Dr. Dake, Mel is going to talk to her PCP.
I've asked him if there's anyone locally he'd trust to do the MRV. Then we've got the intervention to worry about if a problem is found.
Right at the very beginning of the process but it feels good to do something.
Read more : Okay... MRV here we come! | Views : 1262 | Replies : 3
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Post subject: A Tribute to my AMAZING wife (aka Cheerleader) Posted: Tue Jun 09, 2009 10:54 am |
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25 Years ago Joan (aka cheerleader) and I stood at the alter of my hometown church and said these words to each other:
'to have and to hold from this day forward, for better or for worse, for richer, for poorer, in sickness and in health, to love and to cherish; from this day forward until death do us part.
(yes, we chose the traditional vows)
All of us with MS know you find out ...
Read more : A Tribute to my AMAZING wife (aka Cheerleader) | Views : 2801 | Replies : 16
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Post subject: graphic links thorax and cervical Posted: Tue Jun 09, 2009 9:03 am |
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Post subject: Copaxone's mechanism of action? Posted: Mon Jun 08, 2009 10:05 am |
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Most copaxone users know about the dreaded heart racing, flushing, blood rushing side effect. Even if you've never had this reaction, you're told to look out for it. Jeff had it once after taking his injection after exercising. Guess what causes it? vasodilation.
Vasodilation is listed as one of the major side effects of Copaxone. Could it be that this side effect is the mechanism of action for this drug? Researchers have told us they ...
Read more : Copaxone's mechanism of action? | Views : 1981 | Replies : 4
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Post subject: Other options Posted: Sun Jun 07, 2009 10:13 pm |
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I'm curious what other options there are to stent insertion. In effect, we know that Dr. Michael Dake at Stanford is inserting stents to correct the CCSVI stenoses. We also know that Dr. Zamboni is using a different surgical procedure that does not require stents. However, do we know exactly what Dr. Zamboni is doing surgically? Is it a one time fix? Does it require continual use of blood thinners, e.g., Plavix, comparable to the ...
Read more : Other options | Views : 4809 | Replies : 38
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Post subject: 123 Posted: Sun Jun 07, 2009 9:06 am |
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123
Read more : 123 | Views : 1884 | Replies : 4
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Post subject: Getting Ready for Stanford Posted: Sat Jun 06, 2009 12:35 pm |
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I noticed that Mark and I sort of hijacked Holly's thread by discussing the medical records he should take. So, I decided to start a new thread to help those who are on their way to Stanford. I think having the tips and suggestions in one place will help those who are on their way. This is also a good place to ask the general questions......
Here are some topics that could be (and have ...
Read more : Getting Ready for Stanford | Views : 5729 | Replies : 44
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Post subject: Sharon's post op CCSVI Posted: Fri Jun 05, 2009 10:37 am |
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What an adventure!! My "bucket list" (you know the movie with Jack Nicholson and Morgan Freeman), did not have this adventure listed on it, but it does have "fight the MS with everything positive". Even though I feel pretty crappy right now, I think I can put a check mark alongside that entry.
THE TESTS The tests are basically the same thing we have all been through before except for the breathing exercise in the ...
Read more : Sharon's post op CCSVI | Views : 7243 | Replies : 52
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Post subject: CCSVI patients' log Posted: Thu Jun 04, 2009 5:08 pm |
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Hoping each patient can post the following information in this format, so we can keep track here. Please go ahead and add any other pertinent info Marie, Sharon, Holly and the gang....
patient: Jeff
diagnosis: RRMS 3/07 (at age 43)
lesions: multiple brain lesions, 20 or so, small, round and scattered ("Steiners' splashes")
one lesion on cervical spine
symptoms: fatigue, bladder issues, depression, occasional numbness and tingling in feet, leg pain, heat intolerance
EDSS: 1.5 ...
Read more : CCSVI patients' log | Views : 30396 | Replies : 168
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Post subject: CCSVI- just the facts, ma'am Posted: Wed Jun 03, 2009 5:24 pm |
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CCSVI, Just the facts, ma’am
1. What is CCSVI?
Chronic cerebrospinal venous insufficiency... it’s a chronic (ongoing) problem where blood from the brain and spine has trouble getting back to the heart. It’s caused by stenosis (a narrowing) in the veins that drain the spine and brain. Blood takes longer to get back to the heart, and it can reflux back into the brain and spine or cause edema and leakage of red blood ...
Read more : CCSVI- just the facts, ma'am | Views : 63723 | Replies : 114
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