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!
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!
"Personally, I would rather be a dead human being than a living vegetable.". Truer words, Slayer, truer words...
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