Tuesday, November 30, 2010

Christmas Busy

Haven't had much time to blog Too busy with Christmas decorating and writing cards. That's the way it goes with my MS.  The days of multi tasking are long over. Now I'm happy if I can do a couple of things everyday and happy when my  "to do"  list of little things is all crossed out.

Not impressed with all the negative comments and hostility toward my stand on MS surgery You people seriously need to get a life and quite acting like your opinions are so note worthy. " I don't support MS surgery because" "Blah blah blah".   If I want negativity I just need to go to the office. Don't really need it from the MS community. So stuff it!!

Sunday, November 21, 2010

Santa Claus Parade

Everything you need to know about today's Santa Claus parade in Toronto I'll be watching on t.v.

Saturday, November 20, 2010

Man Regrets MS Surgery

Another article in the Toronto Star about a man who travelled to India to have "liberation surgery and now says he regrets it. He does admit to some improvement but I guess not enough to justify the $30,00 he spent and the pain he suffered.

Reinforces my belief   that  this surgery needs to be made available in Canada now!!.

Friday, November 19, 2010

Niagara Falls Man Dies From Complications

A Niagara Falls resident died after complications from MS surgery  Read the artice here.

My belief is that had he not needed to return to Costa Rica, due to  post op complicatons, he might have lived.

We need to have this surgery available in  Canada, as well as post op care .

Tuesday, November 16, 2010

Angioplasty Update

Here's a link to a news story you can watch on CBC's  The National,  for November 15th.
MS patients who travel abroad for angioplasty surgery and have complications;  are being denied post operative care when they return to Canada .

I can't say I blame doctors for  denying treatment to anyone who has had a procedure abroad. Angioplasty to treat MS is not a recognized procedure in Canada. Doctors are in a difficult situation. They would like to help but feel they can't. 

That is why we must press on to have angioplasty recognized as a viable treatment option. There are complications for some, however,  out of the thousands who have already had the procedure only a handful have had problems. Isn't it like that for any treatment? Some people will have problems. I had two teeth pulled out last year and I was stunned when the dentist handed me a list of possible complications. I never imagined there  were so many thing  that could go wrong just from having a tooth removed. Did I hesitate to have the procedure? No and that is the my point. I had a choice. I was an informed patient.  Weighing the risks, I decided to go ahead .

Shouldn't it be that way with angioplasty for MS? We the patients inform ourselves with the help of  the medical community and then decide what we want to do. Instead, the choice is being made for us based on  hesitation (for whatever selfish or unselfish reasons  ) which means no choice.

And my fellow bloggers (if you still read my blog ) Here is quoted text from an email I received from Tim Donovan, who is in the vanguard of fighting for " angioplasty for all". My feelings exactly, but he says it so much better than me.

"Hi Everyone : Please allow me to share with you my feelings on the CBC and CTV stories yesterday about complications arising from the Angioplasty Procedure.
I made a comment on the internet in May about how I was sick and tired of being sick and tired. This started a dialogue with many of you with MS and I felt for the first time that maybe something could be done for this horrible disease. I was skeptical at first like many people , but then I started reading your reports of how improvements were taking place and that people were getting their lives back. I decided at that point to take the risk and have the procedure....I had the procedure done on Aug 5 in Albany NY with Dr.Mandatto. I cannot express in words how much better I am since then !!!  I can now live a relatively normal life. I cannot walk real well yet but I can walk !! My fatigue level has gotten much better, I can stay up most of the day now.. These are absolutely wonderful life changing improvements.
I have heard many, many  horror stories of people living with MS and dying with MS. That is why I took on the challenge to educate Canadians about my improvements and yours. Some people do not see the same improvements as I did, and thats just the way life is. I did not have stents. Some patients have had stents put in and everything has worked very well for them.. Some have had stents put in and are having difficulty getting back to their doctors out of the country for follow up. That is why I am telling everyone to be very very careful where they go for this treatment. The very best place to go is right here in Canada, but we are not there yet!!  We will be !!! but not yet.
I have received a few emails about the CBC report yesterday. Some were negative, many were positive. We are all entitled to our opinions, but Please do not let this cause,  become devisive. We must Stand together !! (pun intended).  We can disagree with each other but please do it kindly and respect the feelings of all MS patients.
My feelings are this, I am not going to encourage people to get this procedure without sharing the possibility of complications arising. If people ,do not want to take that risk that is their decision. I would feel just absolutely terrible if anyone gets harmed by this procedure and I did not share the possibilities with them, even though the risk is very low. I believe that this Procedure Absolutely works, better yet I know it does !!
I would recommend it for any member of My Family, I believe that strongly in it. We must be willing to address all the issues concerning Angioplasty even if they are negative. I get excited every time another MS person gets better, so I try to keep all this in perspective. Many thousands have gotten better,probably well over 90% ( my guess ) some have not. Tell me any medical procedure that can boast these results !!
I am Not a Doctor and I wish a neurologist was doing this instead of me, but if they wont we will !!! We are going to Win, We are going to get this treatment in Canada !!  If the complications of this procedure cause doctors to be concerned, they should be and so should we.
I believe we take more of a risk driving to work in the morning with our cars than we do with having this procedure done. Please be assured before I do any media interviews that I will try to see where they are going with it. We need Media exposure to educate people about this fantastic breakthrough for MS Patients.
We are Making History Today !!
I care for everyone of you, so lets fight this battle together and hope the media continues to work with us.
Until we all get better !!!

Tim Donovan

Yes Tim We should stick together!!

Sunday, November 14, 2010

Reasons To Hope

Here's an a news article from a couple of weeks ago that I  forgot about" Bionic legs for paraplegics.  It's an exoskeleton with sensors.I thought this  would also benefit those with  with MS who are in wheel chairs, so that is a very promising development. 

Another article and a Hooray!! to Hamilton researchers at Mc Master, who have been able to turn regular skin cells into blood cells without needing stem cells to do it. It may be possible one day to use your own skin cells to custom make  other cells your body needs.  

And lastly, an article warning against the MS "liberation surgery" Another bunch of doctors, another medical association, telling MS patients to be patient and take the wait and see approach;  with no valid arguements to explain why people should wait.

Lots of reasons to be hopeful.  Even the negative stuff,  because it shows that patients are exercising their rights and taking control of their treatment options.

Thursday, November 11, 2010

Changing Course

Rememberance Day  Please let us remember that the original intention of this day is "Never Forget, Never Again" Enough said about that.

I haven't felt much like blogging lately. Fed up with all the fighting over CCSVI and angioplasty; I avoided even looking at my blog.

I will continue to post about CCSVI and angioplasty, and will continue to support "angioplasty for all" Will continue to cronicle my cannabis use, but otherwise, I will go back to the original purpose for my blog: A written record of my MS experiences.

Good bye to all the so called experts. I found myself falling into that trap. The guy who wrote the blog
"Multiple Sclerosis Sucks "  is so right about the pitfalls of blogging. He really has the different types of MS bloggers pegged right. What a bunch of self righteous, imagined experts we are, standing on our little soap boxes.  Notice I said we.

How easy it is to sit here and write without ever worrying about being challenged in person. Don't like a comment? well just delete it or  trash it.  Feel like putting another blogger down? Go right ahead because unlike real life, there are no consequences. Hey! people stop reading your blog ? Who cares, there will always be the safe, comfortable circle, or  like minded folks who will cling to you.  They will continue to give you awards and you them. A mutual admiration society.

Doesn't matter if what you preach is unfounded, unproven, or flat out lies. So long as you don't go after the big guys, things will be fine.  You don't have to worry if your so called medical expertise is a bunch of quakery either, because there are so many desperate souls out there who are looking for even the slighest crumb of possiblity. They will try anything and everything in the hope that it will work. 

Solidarity ? Forget it. Everybody is too caught up in wanting to be right  Damn the truth whatever that is.

Goodbye to all that
My astro forecast got it right

Libra- Thursday, November 11, 2010

Your insightful nature reveals issues that often are best kept under wraps. This ability carries a high level of responsibility and requires great deal of discretion. Letting out what you know about someone now is necessary, but it needs to be done at the right time and in a delicate manner.

Monday, November 1, 2010

To Diane With Love

 Dear Diane at A Stellar Life. Here is my rebuttal (in red) to your post regarding CCSVI and the "liberation surgery"

 MS: Enter The Decision Zone

"Decisions, decisions, decisions, MS causes me to suffer from DO (Decision Overflow). Now I need to decide what I believe about the much talked about MS "miracle cure" CCSVI (Chronic Cerebrospinal Venous Insufficiency) surgery. A little balloon in a vein and I'm on my way to recovery! I've always liked balloons"

This flippant comment does nothing to help anybody but Hey, It's your blog!!  I have never heard of "liberation surgery" being called the miracle cure. Anyone who claims such, is irresponsible.

"In 1990, I had to make a decision about going into the Copaxone trial. That would be the first of many therapy decisions I have had to make. I hate this process because I never feel I have enough data to make a good decision. Nothing offered ever makes complete sense. Nothing but keeping up with general good health habits like diet and exercise and basic body testing."

There is tons of information out there about CCSVI which I would be more than happy to direct you to.
At least you had the opportunity to decide; for better or worse.   We, who want the surgery are being denied this.

"CCSVI is not passing my test. I have to use all the information I can collect about it, then think about my and other's (I know IN PERSON) MS experiences. Blogs are helpful, Wheelchair Kamakaze has a fantastic post about CCSVI here. My local TV station ran a story about some people from Seattle who are demanding it and the thoughts of my (so far) favorite neurologist.
So it's not passing your test.  How did you test it? Why throw a wet blanket on it? Nobody is saying you have to have the surgery
Here are some unanswered/mysterious questions that need an answer to pass MY test:
Why is myelin never mentioned? I thought MS was like electrical wires with the insulation being torn off, thereby causing shorts. I'm not hearing how CCSVI will repair myelin, even though my own body once repaired it. No talk of MS being a CNS (Central Nervous System, which includes brain, spinal cord, and every nerve.) attacker, just a lot of talk about plaques in the brain.
I had a HUGE plaque in my brain in 1990, but by 1993 it was completely gone. Where did it go? Docs have no clue. So who can say a drug or CCSVI repair can make fewer plaques? Fewer than what? Fewer than how many?
Myelin is not mentioned in regards to  the surgery That is correct. The surgery doesn't repair Myelin, but doctors think it may reduce Myelin damage. It might not, but so far nobody else can claim that the common MS treatments repair or prevent Myelin damage. Myelin repair is an important avenue to explore and maybe the eventual cure. But isn't it just possible that just Like MS is different for everyone, so might the treatments be?

The people who had gathered to speak in favor of CCSVI (on the Seattle TV show) were all sitting on bleachers just fine, no wheelchair in sight. What was their MS stage? Newly diagnosed? Relapsing/remitting? If so, I am back to same problem I have with the DMD (disease modifying drugs)--MS naturally relapses (goes away) in the majority of new cases, sometimes never to return.

No wheel chairs at the Seattle TV show? Lots of them at the rallies I go to AND lots of those folks have had the surgery and say they feel better. I know because I have talked to them  No it hasn't helped them to walk but they  seem happy with the results and that is good enough for me. Some claim they are able to get out of thier chairs and move around with a walker or cane for a spell.

CCSVI does not help everyone with MS. Why not?

No it doesn't. They don't know why, just like nobody in all the years of research and billions spent, can explain why some treatments work for some but not for others. Heck they still are no closer to knowing what causes MS, but maybe, just maybe,CCSVI research will lead to an answer. 

"The Youtube videos show people walking quite loopy. How were they before and why wouldn't they all have taken a "pre" video? I NEVER walked loopy. I was slow and sometimes the leg would not lift or foot drop, but the walking I have seen is...interesting. I base this not just on how I walked with progressive difficulty, but also have watched friends with MS as they would attempt to walk with cane, walker, commando. Sure, I know everyone is different, but wouldn't I have seen ONE friend walk in such a manner? I have seen people with OTHER diseases walk like the YouTube videos, but it seems to show either a strange walk or a perfect walk. The perfect walk after DX, I have done. I even ran one day! (Last time I ever ran too.) All this years after DX, while 6 years after DX I could not MOVE from chair to table just 3 steps away. IV Solu-Medrol and I was back A-OK and that full body numb never returned. (The full body MS-numb kept me from walking.)

In other words, YouTube is not verifiable.

You doubt the veracity of the Youtube videos? Once again I say if people think it has helped them that is good enough. So you have never seen anybody walk that way?  Not until you have seen the way  every single person with MS walks, will you be able to say that nobody walks that way. What possible reason would these people have to lie?  Nobody is making big money off of liberation surgery. In  fact some doctors were doing it no charge, that's how much they beleive in it. That is until they were threaten with losing their hospital priviliges I don't see Dr. Zamboni getting rich.
  I don't rely on Youtube for facts. I have seen several news shows with folks who claim it has improved their walking and I beleive them.

People are rushing to decisions. gives me time to see their outcome. Researchers need to use proven methods to test this new "miracle." People live with CCSVI and have no symptoms of anything, according to vascular doctors it is not terribly uncommon, our veins are very small--it happens and the blood just uses another vein.

Yes people are rushing. What have they got to lose from having a well tested, inexpensive, safe surgery? A surgery that is used  to treat  all sorts of illnesses and has the potential to treat many more? Ask Dr. Zidanov in Buffalo. He will be happy to tell you about his promising research to use the surgery for many things besides MS.  Angioplasty is nothing new. Heart patients get stents all the time.Over and over if they want; regardless if their heart disease is caused by an unhealthy lifestyle. You can be fat, smoke, drink, and not exercise,and can get as many stents as you desire, but I can't?
People are spending thousands of dollars monthly for drugs that don't work They aren't allowed to spend a few thousand to have a surgery they think might help them? Does that make sense. 

Off point, but why are people with MS so fear driven upon diagnosis, while the rest of society doesn't seem to care so much? If MS is so horrible (and it IS) then why can't the places we donate money to make this a priority---awareness of the horror? Instead society has been treated to stories and photos of those with MS who scale mountains and star on TV shows and do just wonderful things! People who live with normal course MS need to be shown, in our eventual wheel chairs with pee bags at our side.

I have no answer except to say that is exactly why people are fearful. Because nobody gives a damn!! 
When I was diagnosed all anybody wanted me to do was go to a shrink and take about 5 different kinds of drugs. Now they tell me to slow down and be cautious about this surgery Why? It's OK to poison myself with unproven drug therapies( prove to me they work, they don't) but I should sit back and wait five, ten years, until they have more proof the surgery works?
Fearful. Yeah I'm fearful because ever since I came out with my MS I have been treated like crap by people who should know better, but don't.

Why do some people with MS not have CCSVI? Who can say CCSVI is not just another symptom some MSers get? Why do some people with CCSVI NOT have MS? Too many unanswered questions for me to make a decision right now. Am I running out of time? Well, in 1990 at my DX, I was told people with MS by and far have a normal life span, minus a few years. I am secondary progressive and haven't had a relapse in 6 years. The progression is slowing pretty good and I am even improving in the last year. So...

So... we all know that MS is different for everybody, but once again this is not a valid arguement to postpone having surgery" IF A PERSON WANTS TO!!" The research suggests the majority with MS do have CCSVI. Some tests did not follow Dr. Zamboni's protocols and that could be why some are showing as not having CCSVI. 
Who  can say CCSVI isn't just another symptom? You're right however, that's still not a reason to say I should wait for the surgery.

Of course, if you follow my blog, then you know I am not surprised neurologists don't want to refer patients for testing. Nor, am I surprised that this whole idea makes BIG PHARMA sweat injection needles! Both stand to lose a pile of money.
Yeah agree with you there. Which gives me more reasons to support the surgery.

"Another decision. Just another day with MS."

No it's not just another day with MS. So much for solidarity. If you don't want the surgery Diane that is fine .
Your post only causes more doubt, more cynicism, and does nothing to help. You don't want "liberation surgery" move over and get out of the way of those of us who do.

I am supporitng a class action suit against my government that denies me my rights under the health act
I am not a child, I am  an intelligent woman and I think angioplasty might help me. 

I am so disappointed in American bloggers who either ignore CCSVI or brush it off. I have already deleted several MS "expert" blogs  that push the drug mantra or tell me to do yoga.  Why can't you respect those of us who believe in angioplasty  and help us get the right to have it done?   If you don't want to help kindly shut up and let us get on with it.