October 27, 2010

Dani Hay, another MSer, sent this  to a site where I spend quite a bit of time - http://ccsvi-ms.ning.com/  All the points are important but I have bolded point #4. In this 'Just Add Water and Stir" world, it is good to be reminded that not everything is instant - no matter how we wish it were. And - Some things are worth waiting for.


To those friends and relatives who do not have MS themselves:

As I understand it, a lot of the changes are not immediately obvious to anyone but the patient - feeling the numbness leave one's hands, hearing sounds long forgotten because the brain ceased to register them, seeing any amount better than previously and etc. So while a few may be able to get off the operating table and dance immediately, more will have to work their way up to dancing mode. Here is the letter Dani sent:

    I got this info from a fellow treated MSer. I thought it would be helpful info.a Post Angioplasty Tips
    Here's a great email I got from a friend of mine:
    1. Some people take to 2 - 3 months after the angioplasty to BEGIN to see improvement.
    2. There are definitely ups and downs as you are healing. This is NORMAL for you to have good days and bads days. But rest assured the Bad days are still nothing like before and you bounce back
    3. You can experience improvement for up to 18 months after the procedure.
    4. It took Mrs. Zamboni 18 months to feel "normal".
    5. Some people feel more improvement when they raise the head of their bed because it improves circulation when they're sleeping. It's called Inclined Bed Therapy.
    6. Drink lots of water! Being dehydrated can bring on MS symptoms. So much water your eyeballs float!
    7. Make sure you exercise because your body may need to "re-establish" nerve pathways and build up muscles that have atrophied from disuse. Seeing a good physiotherapist is essential in recovery.
    8. Watch your stress levels. Try relaxation techniques to calm down if you feel you are getting stressed as this is NOT GOOD for your health when you have MS. I try to remember nothing is worth me getting sick over.
    9. Make sure you are still seeing your Doctor for follow up care.
    10. I take no medications now for my MS have haven’t since my procedure. I went to research what natural supplements I should look into and recommend a free website that gives a lot of very good information about this topic at ccsvi.org
    11. Sometimes the improvements are so small on a day to day basis that you don't realize them, but one day you wake up and find that you ARE getting better!
    There is going to be a lot more progress in the months and years to come. Welcome to the “Awesome Zone” of Proper Blood Flow and please pass these tips onto other MS friends who would like them it helped me so pay it forward I say.

    Michelle Walsh


Hope this helps everyone!

Angioplasty is the best medicine; humour is the next best!

Saw these photos on the Internet about a person's mind and his desk...

A picture's worth a thousand words

 William F Buckley

 Nat Hentoff

Albert Einstein

 MS Society of Canada

100 Days to Celebrate? Really??????

October 20, 2010

,

I was working on a new blog when I got side-tracked by a link at the MS Society site. It said "100 days of Celebration. Tell us your story." Well, I have a problem with that. What the hay is there to celebrate?? Well for the site it is fund raising. If I thought any of us would get any benefit from fund raising for the MS, I would have celebrated myself. But that money is more likely to go towards Dr. Freedman's Placebo Trials or into some drug company's coffers than into helping any one of us get better.

I did a slow burn for a good part of the day and then I decided to tell them MY story. It's not quite what they are expecting but here it is:

MY Story

Earlier this year I had a flareup - a first of this type and frankly it was scary. I have not always been able to get around like I used to but not being able to get to the phone when it is less than 3 feet away to call for help is indeed scary stuff! When I finally got to the hospital, I was monitored for hours and catheterized because my hand would not allow me to do it myself, and sent home. A meeting was set up between me and the MS people on the 6th floor at the Ottawa General. My first 20 minutes with them involved answering a bunch of questions about my driver's license. In 40 years of driving, 14 of them as a professional driver, I have had exactly one driving offense. I have never been what anyone would call a dangerous driver. No one asked if I had a car or rented one. Please tell me - what exactly does my driver's license have to do with MS?? Seems to me that it is between me and the Motor Vehicles Bureau.

Then I was ushered in to see a doctor - a Dr. Vosougi, Reza. I guess he is a good guy but he is absolutely a lousy listener. I never got one statement finished before he butted in, talked over me, <knows everything! Amazing man!> If there was a sarcasm font, rest assured that the four words between the < >would have been written with it. Frankly, I think his rudeness had more to do with the fact that I am female than anything else. After checking my reflexes, he wrote a prescription for Gabapentin. Forgive me, but how did he come up with a drug used for epilepsy as the best one for me and my MS?? in 20 minutes where HE did all the talking? On our next visit I complained about it and his response was, "Who are you to be judging me?" Well, let me tell you. I am the person who lives in this body and I have lived in it for the past almost 65 years. I am also someone who has had some very good doctors in the past 45 years and who has had some real quacks. The good ones listen. Discuss the problem. Discuss the possible treatments. Point out the pros and cons of the proposed treatment.  Any time you have such a doctor working at the Ottawa General, MS section,  let me know. I will be interested.

Dr. Freedman is NOT that doctor. The Placebo Trials for Angioplasty he is endorsing are a tad draconian. It feels like we are regressing all the way back to the Dark Ages. Angioplasty has been around since the late 1970's. Ultrasound is not new either. Angioplasty CAN be dangerous but no more than many other surgical procedures and a lot less than some. I am sure that there were no placebo trials for heart transplants - patients had it and died, lived a little longer or just plain lived; not having one meant they died without any options. A chance the transplant patients took and to some degree, still take. Why is it so difficult to understand that angioplasty for MS patients who are seeing themselves turn slowly into vegetables is no different a position?  Personally, I would rather be a dead human being than a living vegetable. And if a doppler is done before hand, the angioplasty is not a blind test - Angioplasty is then done or not done on the strength of the doppler results. If there are no blocked veins, there is no angioplasty.

Want to do trials? Do real ones on people who doctors have diagnosed as having MS and who’s Doppler results show blocked veins. If they improve - good! If they don’t – well if the doppler’s show blocked veins, something has to improve when they are opened even if it is only their circulation. If the majority of people diagnosed with MS also have blocked veins and they all improve to some degree – it is not wasted time, money or effort. (Perhaps Dr. Freedman and company should be looking at things like the differences in symptoms, the various locations of the lesions, the relative size of the lesions compared to the number and ferocity of the symptoms and etc. A person could respect someone doing that. There's not an awful lot of respect going around among us MSers re Placebo Trials.) Should some have no indications of blocked veins, perhaps there are multiple types of this condition; Perhaps they have been misdiagnosed or perhaps the blocked veins are a symptom rather than a cause though I personally do not believe that. And if that proves to be the case, then perhaps those who do not have blocked veins should be looked at again. Could be that one group or the other has been misdiagnosed. Perhaps doctors need to start seeing themselves as trained human beings, capable of being wrong instead of perfect specimens. They are only legends in their own minds which is different from being legends to everyone.

In case you missed it, I am angry! I am angry that some doctors treat us like we are mentally incompetent. I am angry that no one at the Ottawa General 6th Floor said a word about any of the help this URL claims to offer when I was there – too busy doing MVB work I guess. I am angry that there is more money to be made from delaying treatments and cures than there is from getting on with it. Looks like MS is going to be cancer’s competition in that regard. Wonder which one will be the bigger cash cow in the end? I am angry that doctors are apparently no longer taking the Hippocratic Oath, especially the line, “I will follow that system of regimen which, according to my ability and judgment, I consider for the benefit of my patients and abstain from whatever is harmful and mischievous.”  Sometimes doing nothing is more harmful and mischievous than doing something. I am angry that the only way for me, at this precise moment, to get this Angioplasty done is to have a bunch of money and leave the country.

You asked for my story. This is a three for one deal – you get my story and my opinion and my anger. But it is nothing to celebrate. And I won't bother watching for it to on site. But if the attitudes change for the better at the MS Society, well I am not one to ignore progress. I will come back and say “Congratulations! Good Going, Folks!” Of course, that will need to happen before I lose the ability to type, so keep in mind that I can no longer hold a pen. Time’s a-wasting!

How long have you had MS?

October 14, 2010

Do you remember when you first found out you had MS? Do you know how long you have had it? It is unlikely you really know. Most doctors treat the symptoms long before they even think of MS. After all, if you have a problem with your eyes, for example, they treat your eyes. If the symptoms go away on their own, chances are you will both forget it. You may go through that process several times before anyone starts to wonder about the problem being bigger than the symptom. Here is how it played out for me.

Doctors had been talking about 'maybe it was MS' for a few years but no one actually made a diagnosis or at least never told me they had. I was unable to work at anything - the market was depressed and my age worked against me. I'm an accountant and a paralegal and without any feeling in my right hand, holding a pen for more than a couple of minutes, or typing is pretty impossible especially when there were time requirements. So I have been on O.D.S.P. since my savings ran out a few years ago.

But for the years between a cancer operation in 1990 and O.D.S.P. my savings and the odd job kept me going. And my sister in South Africa put a roof over my head for about three years. It was while I was at her place that I knew I had MS.

I loved to walk and I loved walking around Polokwane checking out the flowering trees and the beautiful birds and the odd wild animal. Christmas is a real fun time for a Canadian to be in South Africa. It is hot with temperatures going up into the mid thirties Celsius and it is very dry. I would go to the mall and have the grandest chuckle at the cotton wool snow and those poor native's dressed as Santa complete with padding to make them seem fat and jolly. Everyone would sing "Jingle Bells" and I always wondered if they had any idea what a 'one horsed open sleigh' was. There certainly were none anywhere to be found in South Africa or anywhere else on that Continent, for that matter.

I was headed home from one of these jaunts when my left foot broke the rhythm by flying off to my left and at a weird angle, nearly sending me flying. Initially I told myself I must have stepped on something but it did it again with my next step and the one after that and the one after that. I knew I had seen that gait before. A gal I used to know who had MS started out like that. Hers got much worse quickly and she eventually could not control her limbs or her speech at all. My little episode went away after a couple of days but I knew. A few months later I was back in Canada.

I mentioned my fears to the doctors here and they just fluffed it off and gave me anti-depressants. They also got really ticked off at me for ‘self diagnosing’. I do not understand their anger. I have lived in this body for 65 years and am very tuned in to it’s little foibles; they looked at a few isolated portions of it for less than 20 minutes and claimed to know more about it than I did. And they did that for the next 6 years.

During those 6 years I went from walking to walking with a cane and then to depending on a walker. I also went from being able to do short term jobs to not being able to anything in an office. If you never thought about it before, just think of how many of the usual office procedures depend on your hands and fingers being in working order.

My right hand had been pretty well useless at doing things above waist level since that breast cancer operation in 1990. Well I thought it was useless but it got more useless. Back then I couldn't move my arm above my waist but I could feel things. Now I was experiencing moments, sometimes days of being unable to feel anything. Glasses and mugs slipped out of my hand to the floor if my concentration wandered; buttons were impossible to do up. My writing went from pretty good to unreadable. My doctor's response - give me yet a stronger anti-depressant. So I moved from small town Ontario to small city Ontario. And I got a new doctor. My Dr. Yau is a gem, a diamond that would make Cecil Rhodes' discoveries fade in comparison. Sadly for me, she isn’t an MS specialist. She’s my G.P.

The first noticeable difference - she listened to me. Then she didn't fill me up with "head" pills. Then she sent me to a fabulous little place here in Ottawa - The Elizabeth Bruyere Day Hospital. There they taught me some excellent exercises to keep from atrophying totally. They showed me some household devices that would help make some things easier - a great little gadget to make getting out of the bath easier; a scooter to make trips to the grocery store and back possible etc. And sometime during the three months I was going there, my bladder up and quit. So they taught me how to catheterize myself.

I'm not sure but I think it was the bladder thing that really got the ball rolling. My next trip was out to see the MS people at the Civic Hospital. The doctor I saw there fired questions at me. Questions about fainting, tripping, numbness and etc etc etc. Lots of the areas he touched on were familiar – sort of. I grew up on a farm before Medicare, We did not go to doctors unless we were super sick. I didn't change after Medicare. I seldom got sick and I went to doctors even less often.  But I had had little problems with most of the areas he mentioned. Few had been bad enough and none lasted long enough to send me to a doctor. Well except two.

Question: "Have you ever suffered temporary blindness?"

Answer: No but I did have a strange thing happen back in 1988. I suddenly had black spots in the middle of whatever I looked at and that turned to double vision. I had at least a half a dozen tests. They were done at The Calgary Children's Hospital, but they could not find the cause and no one even suggested MS. It lasted about three months and then just up and disappeared. It has never happened since so I just wrote it off as some sort of quirk." And

Question: Ever had any strange incidents that we haven’t mentioned yet?

Answer: Yes. Once my back just gave out on me without warning and for no apparent reason. I could not hold myself erect no matter how hard I tried. I went to a doctor who gave me lots of tests but never had an answer. He recommended physiotherapy. It didn’t make any difference so I took it upon myself and strapped my back. I.e. I taped it tightly so that I could walk upright. About a week later I was fine again.

Those two questions plus all the others plus the MRI results plus the failing bladder and finally I have a diagnosis. Multiple Sclerosis!

Then last year, CTV’s W-5 showed me The Liberation Treatment. A possible Cure? Treatment? Hope? And that possible cure/treatment/hope is called  Angioplasty for CCSVI (Chronic cerebro-spinal venous insufficiency). But it isn't available here. I can fly all over the place and get it done if I pay for it myself. But I cannot get it done in Canada, one of the most modern, rich, progressive countries in the world - well unless you are talking medical procedures - that is a trip back to The Dark Ages!

Yup folks! Only in Canada! Here I am, finally with a diagnosis and running into more medically inspired smoke and mirror jobs than ever before. Like 'let's collect more money for research.' There is no profit in cures, only research. Like we need placebo trials for CCSVI. See Placebo Effect on the page entitled 'What Are MS Dragons' for a brief monologue about it. Please feel free to turn it into a dialogue by adding your 2 cents in the comment area.

So, have you figured out how long you have really had MS?? Officially I have had it for a year. Unofficially - Who Knows?

Are You a Part of the Solution?

Tuesday, October 12, 2010

 

 

As you may be aware, there has recently been a hopeful, possible breakthrough for those of us with M.S. It is called CCSVI. There is a lot of info on the Internet about it. Just type CCSVI into your search engine or you can go to http://en.wikipedia.org/wiki/Chronic_cerebrospinal_venous_insufficiency . It's good for general info but if you are looking for something more technical and scientific, do the search. (Targetting one over another could be misconstrued, hence the generic wiki.)

But I digress!  CCSVI is what a great many MS sufferers are looking at to give them relief, hopefully complete relief but I know that I for one, would be happy with any relief. In spite of some of the head butting we are doing with some of the medical 'experts' and politicians, there are some places who appear willing to  move forward.


St. Joseph's Healthcare Hamilton, in collaboration with McMaster University, is doing research on the correlation between CCSVI and M.S. And they need some volunteers. Below is a copy of an email I received earlier today. As I have MS, I do not fall within the required parameters. Here's the email:

As you know, St. Joseph's Healthcare Hamilton, in collaboration with McMaster University, is doing research on the correlation between CCSVI and M.S. 

They need healthy volunteers, between the ages of 18 and 65 to have an MRI and Doppler Ultrasound. It will take approximately 4 hours of your time.  Parking and travel with be reimbursed up to $50.00.

Healthy volunteers must not have M.S. or be genetically related to anyone with M.S. However, they can be a spouse of someone with M.S. At the present time, females are preferred since the incidence of M.S. is greater in women than men, but men are still needed.

If you are interested in helping advance the science and understanding of CCSVI and M.S. please send an e-mail to:

Andrea Mazzetti
Research Assistant
M.S. CCSVI Study
Email - amazzett@stjoes.ca

 Now you may be generally  healthy but the MRI cannot be done if you have certain metals in your body. People with metal implants  may not be able to have a MRI performed. The reason is that the MRI is done using a very strong magnetic field to create the images. Some metal implants could cause problems if subjected to these incredibly high magnetic forces. I have no first hand knowledge about implants but I do know it can turn a hairpin into a lethal weapon. Fortunately, there was no one between me and the machine when it was ripped from my hair and sped faster than a bullet into the magnetic field. So Be sure to check with your doctor to ensure that your implant is safe for MRIs. 

I am not claustrophobic but if you are, perhaps this is one volunteer job you should by-pass too. I

So, in short, for this Volunteer job

1. You will not have MS yourself.

2. You will not be genetically related to someone with MS.

3  You will not have any metal implants.

4. You will not be morbidly claustrophobic.

5. You will live in Hamilton, ON or nearby.

Again, the person you want to get it touch with to volunteer is

Andrea Mazzetti
Research Assistant
M.S. CCSVI Study
Email - amazzett@stjoes.ca

It’s time to slay the MS dragons

Hi, My name is Karen and I am a Canadian with MS. It appears I also have a serious case of clinical frustration.

I know that if you have MS, you have probably had to slow down too due to fatigue or uncooperative limbs. But the fight for a viable treatment requires that, if we want to get help in this millennium, we are going to have to set the speed at “WARP”. And we are going to have to behave with all the courage and determination of our great Canadian soldiers – they have a reputation for not giving up the fight (just ask anyone with a family member in the Canadian Armed Forces now or in the past.)

And who are the enemy?  Well, where should I start?  There are the doctors who misdiagnose our symptoms. There are the doctors who are married to the drug cartels………..oops!  drug companies. There are those who claim to be on our side but aren’t like the MS Society of Canada. There are the politicians who either do not know about MS or are disinterested. There are even more politicians who do know but play the Pass The Buck game, usually the Feds passing the buck to the Provinces or vice versa  The list of dragons goes on and on. If you have an MS dragon (enemy) you would like to mention, do not hesitate to add him/her/it in the comment section.

And who is soldiering with us? Well there are individuals all across Canada with MS. There are the concerned relatives of MS sufferers. There are some G.P.s who would like to help but are threatened by the more powerful specialists. There also are people who do not have MS but do have other conditions that are getting the same snow job as we are. Cancer patients for one. http://www.ctv.ca/CTVNews/Health/20100929/cancer-drugs-100929/
And there is the media!  They have been very busy on this front. When Dr. Zamboni came out with his CCSVI theory, hardly a newspaper in the country missed it. And W-5 has been very good at keeping it in the foreground. http://www.ctv.ca/CTVNews/WFive/20100409/w5_liberation_update_100409/
Are you feeling like a Reserve Soldier when you really want to be an active one? Me too! That is why I am starting this blog hoping to reach as many MSdragon slayers as possible. If we are going to win the war, we have to slay the dragons sent to stop us. We have got to be united, not just as Provincial  citizens but as Canadian citizens. If some argument  put forth by the folks in one province to the powers-that-be gets a positive response, share it. If it works in B.C. for example, it might work in Newfoundland too with a few changes to localize it. So Share It!!

The Placebo Effect

At our last meeting at John Purcell Place here in Ottawa, we heard from a gal who shared with us Dr. Freedman’s and Yves Savoie’s arguments for trials that include placebo treatments. In a more perfect world, perhaps we could be satisfied with this. But not in THIS World in 2010. If you are not sure what The Placebo effect is well it is a useful tool most often used by drug companies and research groups to see if the good a patient feels is real or if it is just brought on by wishful thinking. If drug X is supposed to make you pain free with a situation that is pain filled, this is good. But if drug P takes away your pain and it was in fact just a sugar pill, that is not good.  That is the Placebo effect.

Angioplasty however, is not a drug.  It is a surgical procedure. They cut you open and put a balloon or a stent in a clogged artery or a vein to allow a freer flow of blood.  This is a lot more invasive than, “here is a pill and a glass of orange juice. Now down the hatch with them both.” If you run into trouble with a pill, there are most often, ways of reversing the effect varying from pumping your stomach to another but offsetting pill. Those of us who are willing to undergo the CCSVI procedure are well aware of the risks. We will also have had a doppler ultrasound beforehand and that will say whether we should go through with it or not. No clogged veins – no CCSVI procedure!

But Good God! We want to know there is a procedure taking place in the first place. If we are going to go out on a limb, it should not be broken before we even venture near it. These two men who do not have MS think they should be allowed to perform a surgical procedure of half of us that is designed to be a sham from the get go. How humane is that??  It isn’t. It is a form of abuse. If I die while they play pretend games, then what? Well, we are talking about doctors. Do you know of any Canadian doctors who have screwed up and then stood up and said, “I screwed up.” If you do know a doctor like this, go right now and nominate him for The Order of Canada. Hmmmm I do not see a stampede. Chances are they will cover up, lie, refuse to testify against each other and etc, won’t they?  Hmmmmm We have gone from abuse to murder of some degree and I would push to have it declared 1st degree since it was planned and plotted out before hand. And to what end? Well the Provincial and Federal control freaks get to keep the status quo where they want it with lots of money coming in and little or no medical results to show for it. You know……like the 60 some odd years of collecting billions world wide for cancer. Personally I have a hard time believing that we can fly around the Milky Way, sit at home and spy on someone halfway around the world And we with MS get to move from cane to walker to scooter to wheelchair to bed and finally to our coffins.

As I write this page I am listening to Dr. Freedman. And I am getting angry. He says, “Why would you fix something that has nothing to do with the disease?”  Well, because it is broken regardless of what it has to do.  Works for me. If Dr. Freedman had a patient on his table with one problem and another problem  showed up and made itself  known, would he just ignore it?? I sure hope not. I am on his patient list. And as I mentioned, this is 2010. We have MRI available. If the treatment in fact hasn’t worked, the lack of change in one’s MRI would make it obvious without having to put some unfortunate through a placebo operation.  He used the correct word when he called it a sham.

The mention of MRI brings another thought to mind. If I have lesions on my brain, are they in the exact same spot on the next MS sufferers brain?  I don’t think so! If it was we would all have very similar symptoms and we do not. If you want to do some trials, give a bunch of us  CCSVI, then compare our pre-CCSVI results with our post operative results. MS is not a one size fits all condition and it probably will not have a one size fits all resolution either. Science is great! The world is much more interesting and, in some ways, so much better off because of it. But science should not leave logic out in the hall  and that is where Mr. Savoie and Dr. Freedman seem to be leaving theirs.

So How to slay the dragon

Well there are a lot of ways. The first is to keep fighting. Write letters to your M.P., your M.P.P., the newspapers, the TV stations. March with signs that scream out for relief for  MS patients. If you are writing someone in the Federal Government, don’t forget postage is free. In fact, if we could all write the same person in the same week, he/she would have to take notice.  Be polite but firm. I know how hard that can be when you are dealing with closed minds but try. Cursing and name calling will be used by them as a means of dismissing you. It never works. It does make me feel better though so I write my thoughts on Word and then go back and clean it up before sending.

Right now The Globe and Mail has a site where you can dream online. Go to their site  http://www.ourtimetolead.ca/ Make up a headline that you would really like to see in the paper about MS. Then send to the editor. I have a couple up there. More have been refused but, trust me, if enough people do it, they will get the message. And if you see a good one about MS, let them know you like it.

Well I am off to sharpen my dragon-killing sword.

Catch you later