Here's Your Sign! I am reminded that the venous condition we share is congenital. That is not synonymous with hereditary as we don’t know the causal factor or factors. They could be caused by infection during pregnancy, nutritional deficiencies of iodine, riboflavin, vitamin A, toxins or other unknown factors. That MS can be passed genetically is a well accepted theory. It can be very confusing for individuals trying to gain an understanding of illnesses, conditions, abnormalities and disorders to understand the difference between a congenital illness or disease and a hereditary condition or disease.
While both may seem as though they are present from birth, it actually does make a difference how and when an illness, disease or condition is contracted as to whether it is considered hereditary or congenital. A congenital condition is one that develops not from the family history or genetics,but from influences which occur while the child is still in-utero. Why the Inaccuracies in Restenosis Statistics? The topic of the day appears to be restenosis percentages and statistics. I think I have talked about it on four or five different group pages, so I copied my last comment to post it here.
The numbers we are tossing around are likely very inaccurate at best. Everyone is going to have very different opinions because each case is unique. All of the points made have merit. One of the reasons there is so much disparity is because all doctors do not openly communicate. That is hardly news worthy because it doesn't normally happen for any medical procedure. This is a global issue and unique in that the Internet has been the driving force behind this issue. Facebook long ago! Flip Your Tweets. CCSVI Locator. Connecting to the iTunes Store.
CCSVI Locator. CCSVI Locator. CCSVI Locator. Chaîne de pissonms. 6 months post angio.m4v. Kiss my butt and have an apple! #smileymail. Things Have to Change! Much of 2010 was spent living , thinking, dreaming, sharing and worrying about MS and CCSVI. I suspect 2011 will find me living along those lines. I also have to admit that too much time was spent in conflict with others who do not share my views and opinions. While most of us have this one thing in common, it may be the only common denominator for some. I intend to remain an advocate. I also owe something to myself. As much as I have learned to care about so many online friends, I am realistic enough to know that not all may feel the same way. I would wish for this year to include more honesty and less drama.
I will no longer worry about yesterday. I will no longer worry about tomorrow. I will look in the mirror and I will see a person worthy of my respect and admiration. I will cherish each moment of my life. I will take a moment to step off the beaten path and to revel in the mysteries I encounter. I will take life one day at a time, one step at a time. Uk. Looking Forward to the New Year! My New Year’s Resolution is to continue the fight to assure safe and effective treatment for CCSVI for all, regardless of nationality, financial situation, or negativity of their own physicians. CCSVI was the top story for 2010.
It will be the biggest success story for 2011. We have become the largest and most successful patient advocates in modern history. The tyranny of a few has ended, but there are many to take their place. We have prevailed against the power and influence of drug companies, MS Societies and our own neurologists to end the suffering and disability of a great number of people diagnosed with Multiple Sclerosis. Don’t give in to the dismal rhetoric of those who are beginning to mourn the loss of their cash cows, and lashing out in every direction to check our progress and end our dreams. Happy New Year to all of you! Cognition Issues in MS/ CCSVI. Cognitive Issues In MS / CCSVI: I often said only half jokingly that of all the things MS had taken for me, I missed my mind most. I couldn’t remember where I put things, important dates or even what day of the week it was sometimes. Thoughts I wanted to express were not the words that came out of my mouth.
During remissions, I did not get total relief from these problems. When I progressed to SPMS, I was afraid I might really lose my mind. Many people with this condition have cognitive problems. Some people are telling us that we cannot repair the damage already done to our brains. Lumosity trains your brain with 30 targeted brain games and exercises. The games are well designed: the Birdwatching game works on your visual processing skills and concentration. Sharp Brains is actually a blog that keeps tabs on the brain fitness and cognitive health industry. Tory. We can't throw caution to the wind, but full speed ahead! There are a few things that I hear and read very little about concerning the Liberation Procedure.
Though the original name gave it a somewhat theatrical air, I find it more appropriate as my life improves. There are common sense steps to take for any medical treatment or procedure. There were no “Guides to Liberation” when I first began to investigate what I thought might be another puff of smoke in a long line of broken promises I came to expect after 15 years of Multiple Sclerosis. Dr. Zamboni and other front line pioneers seem to have back peddled a bit. Finding Common Ground. Things are hectic for everyone right now and I’m no exception. I have fallen back on my blogging to work on Christmas projects. Today I decided to go to an MS meeting, not something I have done in a very long time. I was invited by a friend from the CCSVI Locator group who lives close by. We had never met in person and communicated only a few times on the internet . I didn’t know what to expect or how I would be received. The normal time to close was ignored and there was considerable chit chat after the meeting was concluded.
No Excuses, No One to Blame and Nowhere to Hide... I'm sorry to hear about this. So much is still yet untested. There needs to be improvements in the procedure itself that will only come with experience and shared learning. I knew nothing about the sigmoid sinus until shortly before I had my second procedure. It may well be that the liberation procedure will be found more effective with complementary treatment. Another Good Doctor Bites the Dust!/MS facts! BTW: Those of you who know a little bit about my personal journey through CCSVI might be as tickled as I was to hear that my "before CCSVI" neurologist will no longer be treating Multiple Sclerosis patients.
Although the announcement was hardly fancy, it was received with glowing reviews by a few of us. His pet project is sleep disorders. "Due to the accelerated demands and importance of sleep disorder studies, I will no longer be able to treat patients with Multiple Sclerosis. Present patients will be referedd to DR.______ or DR. _________,my former associate who dealt with that portion of my practice. " Of course this is just the tip of the iceberg, but it tickles me.
I won't be receiving anymore regrettable communications from him in the future, I'll wager. Suicide and multiple sclerosis: an epidemiological investigation. Suicide among Danes with multiple sclerosis. We deserve the truth and the right to pursue a normal life. The truth can't set anyone free if the story is never told. Sometimes abstaining from telling the truth is more damaging than an actual lie.
In another arena I would speak about sins of "commission" as opposed to sins of "omission". Withholding a truth that causes pain and suffering to others by our silence is no better than participating in the wrong doing itself. I believe we are witnessing something akin to this by those who are in a position to make a real difference in the acceptance of CCSVI and refuse to do so. The doctors who treat Multiple Sclerosis had to at some point believe in what they were doing. My Thanksgiving Prayer. Tomorrow is Thanksgiving Day.
Five years ago, I was busting my butt baking pies, side dishes and homemade yeast rolls. I was fielding calls from my kids about who was bringing what and who to our feast. The next day we all ate too much, played games, watched the Macy’s Thanksgiving Day parade on the living room TV, while the guys scrunched into the extra bedroom to watch football. I have at least three dozen pictures of family, food, and me running around like the turkey we were about to eat when he got his head chopped off. Last year at this time, I was sitting in bed crying because I didn’t know what to wear to my daughter’s house who was hosting the family get together that time. The girls stopped calling me for baking instructions several years ago. I simply didn’t remember how I made homemade bread and stuffing. Don't Ask, Don't Tell! Absurd Double Talk of the Month OR WTH?! This is an example of what happens when you ask dumb questions to dumb people. I simply asked why there is so much opposition to providing angioplasty to people who have CCSVI.
In answer to my e-mail, this is in part the reply from a neurologist in Canada. Any reply at all was unexpected, but below is beyond me . "….the concern isn’t for the people with a *factitious disorder, or diseases that are impossible to diagnose because they do not exist. Chronic Fatigue Syndrome and fibromyalgia are adequate examples of illnesses that are diagnosed for individuals unable to manage stress. Dr. This term was unfamiliar to me so I looked it up. *”Factitious disorders: are conditions in which a person acts as if he or she has an illness by deliberately producing, feigning, or exaggerating symptoms. **"Placebo: An inactive substance or dummy treatment administered to a control group to compare its' effects with a real substance, drug or treatment.
" Childbirth and The Angioplasty Procedure for CCSVI! You might be happy to know that Megahn's procedure was a complete success. Her ilj was almost totally blocked, The irj was 45%. The azygous had blockage as well as an occlusion in the left sigmoid sinus. She is standing, raising her hands above her head,and the spasticity driving her crazy non stop: stopped! It has been only about six hours.The greatest thing of all is she was able to stand, holding her new baby, Jennie. She was leaning on her husband for the pictures , just to to be safe. Tory.