Interesting discussion:
http://www.sciencebasedmedicine.org/?p=6465
August 11, 2010
August 6, 2010
Buff but bummed
So why oh why am I spending the REST of my days in sleep or sluggish brain death? I should be getting peppier as I go, as I lose weight, gain muscle - but instead I slump and collapse after lunch, sleep for hours, wake for dinner, sleep more.
And worse, despite the muscles, lifting groceries is still so difficult. Doing housework seems beyond me.
I know my body is getting in shape, but something in it isn't getting the memo. Although I can see slight improvements to stamina, I'd expect more after 30-60 minutes of exercise almost every day for weeks.
All I can hope for is that with cooler weather, all this work will show. And nap to extremes now.
August 2, 2010
Nocebo, placebo, kissing...we need to know more!
And so it starts. Some studies refuting Zamboni's claims: http://www.news-medical.net/news/20100802/Research-shows-no-link-among-CCSVI-and-development-of-multiple-sclerosis.aspx
Two small studies, and I'm sure those looking for a conspiracy will note that they were conducted by neurologists, but they are a start of a question around this issue.
Saskatchewan has decided for clinical trials of the venoplasty but I've noticed that guardrails are being placed around their statement as talk progresses. Still, I do hope we get some REAL evaluation of this procedure, not just anecdotal statements of hands feeling warmer or being slightly better for a while. I want longer follow-up, better testing, perhaps MRI changes.
One of the other interesting studies I read lately mentions how people with MS are more likely than those without to react negatively to placebos, to complain about side effects from sugar pills, etc. The "Nocebo" effect, as studied in this meta analysis review. http://msj.sagepub.com/content/16/7/816.abstract
We've always known that the placebo effect has a strong impact on study results; now it seems we react more both to positive and negative stimuli.
It's enough to make one feel like a hysteric or hypochondriac. But perhaps there is something important here that speaks to the damage our brains have undergone. Perhaps they are "twitchier" due to the irritation MS causes. Perhaps that's why we seem supersensitive, in good ways and bad.
It's hard to know. But it does make me suspicious of small studies that purport to find success. And it speaks to the need for larger studies, repetition of results, before we can wave the flag of success.
Another study, mentioned to me by a dear friend, speaks of tongue stimulation to increase the ability to walk. http://www.jsonline.com/features/health/54545577.html
Interesting stuff. Myself, I prefer my tongue stimulation when shared with another. I feel this study gives me the right to explore kissing with as many people as possible (or one as often as possible) as a MS treatment. And I don't care about any placebo effect....
But hey - in all the studies that show success in MS treatment, they also talk about physical therapy and exercise regimes to rebuild muscles. And yet no one seems to look at just exercise as a treatment for MS. Perhaps because there's no money in it?
Two small studies, and I'm sure those looking for a conspiracy will note that they were conducted by neurologists, but they are a start of a question around this issue.
Saskatchewan has decided for clinical trials of the venoplasty but I've noticed that guardrails are being placed around their statement as talk progresses. Still, I do hope we get some REAL evaluation of this procedure, not just anecdotal statements of hands feeling warmer or being slightly better for a while. I want longer follow-up, better testing, perhaps MRI changes.
One of the other interesting studies I read lately mentions how people with MS are more likely than those without to react negatively to placebos, to complain about side effects from sugar pills, etc. The "Nocebo" effect, as studied in this meta analysis review. http://msj.sagepub.com/content/16/7/816.abstract
We've always known that the placebo effect has a strong impact on study results; now it seems we react more both to positive and negative stimuli.
It's enough to make one feel like a hysteric or hypochondriac. But perhaps there is something important here that speaks to the damage our brains have undergone. Perhaps they are "twitchier" due to the irritation MS causes. Perhaps that's why we seem supersensitive, in good ways and bad.
It's hard to know. But it does make me suspicious of small studies that purport to find success. And it speaks to the need for larger studies, repetition of results, before we can wave the flag of success.
Another study, mentioned to me by a dear friend, speaks of tongue stimulation to increase the ability to walk. http://www.jsonline.com/features/health/54545577.html
Interesting stuff. Myself, I prefer my tongue stimulation when shared with another. I feel this study gives me the right to explore kissing with as many people as possible (or one as often as possible) as a MS treatment. And I don't care about any placebo effect....
But hey - in all the studies that show success in MS treatment, they also talk about physical therapy and exercise regimes to rebuild muscles. And yet no one seems to look at just exercise as a treatment for MS. Perhaps because there's no money in it?
July 26, 2010
to all those travelling for CCSVI and stem cell treatments
Oh, how I wish you wouldn't. There are so many people just out making a buck off of you. It breaks my heart. And I know about desperation about MS, really. My own life has been destroyed.
Offshore Stem Cell Clinics Sell Hope, Not Science
Dr. George Q. Daley sits at his keyboard and types "stem cell treatments." In less than a second he gets 13.4 million Google hits.
"Here's a website where they claim over 1,500 patients treated," says Daley, one of the world's foremost stem cell researchers. "That doesn't mean they've been treated successfully. It's 'buyer beware!'"
But consumers have a hard time sorting out all the stem cell claims out there. Websites often look professional and convincing. Typically they feature distinguished-looking white-coated doctors posed in front of bookcases, technicians holding up flasks with mysterious colored liquids, and happy, healthy-looking clients cavorting on beaches.
Often these clinics are based in the Caribbean, the Ukraine, China, South America. Sometimes it's impossible to tell just where they are; to contact them, you fill out an online form and they get back to you. The US-based websites typically send their clients offshore for treatment not approved by the US Food and Drug Administration.
EnlargeRichard Knox/NPR
Dr. George Daley is one of the world's leading stem cell researchers. He holds a file of letters from desperate people seeking stem cell cures. Daley warns patients not to fall for foreign stem cell clinics which sell unproven treatments at a high price.
False Promise
These days stem cell clinics offer cures for practically everything that ails humans – spinal cord injury, heart disease, multiple sclerosis, Parkinson's. "Everything from A to Z," Daley says.
Unfortunately, Daley says, stem cell therapy is effective for only a few blood disorders, such as leukemias and thalassemia.
"We do about 80 of these a year, and about half the time we can cure the patient," Daley says. "The problem is, if you have diabetes or Lou Gehrig's disease or Parkinson's, stem cell treatments are not the answer today. We hope they will be in the future. But they aren't today."
There are a growing number of legitimate human experiments with stem cells for disorders such as heart failure, spinal cord injury and neurological disease, both in the United States and abroad. Experts say these clinical trials should be labeled as experiments. And prospective volunteers should look for telltale safeguards, such as oversight by ethics boards and approval by governmental regulatory authorities.
Premature claims of stem-cell therapy success is driven by a certain magical aura surrounding stem cells. Under certain laboratory conditions these cells can turn into almost any type of tissue. They promise regeneration. To desperate patients with incurable disorders, that notion is irresistible.
(see the rest of the article by clicking the link)
July 23, 2010
Every once and awhile, this disease scares me...
I know I've been lucky. Since my diagnosis two years ago, my progress has been slow, almost benign, except for the weeks of fatigue, the more than infrequent difficulty walking, the numbness in my nethers, the confusion.Last weekend I went to a lovely picnic put on by the local Chapter of the MS Society as part of their student summer program. Almost everyone there was in wheelchairs or walking with tremendous difficulty. Some used tubes in their mouths to push the remotes on their wheelchairs. Many needed help eating. It was sobering.
Today, I dragged my somewhat unenthusiastic legs over to the gym to try a workout - (I am going to beat this diabetes thing to death if it kills me!) (and I want to keep my muscles in as good shape as possible) they were dragging a bit and I was wondering if I could do it - when I passed a woman who noticed my MS walk T-shirt and said "good for you!" and explained she had MS. She was in a power wheelchair with head support. When I told her I had MS, too, she said, "wow! You're lucky you are still walking!". I agreed...
Coming back from my workout I joined a man in the elevator who was carrying a gym bag, so I asked him if he was just coming back from the gym, too (as I sweated profusely beside him). He said, no, he was going later, and then he saw my T-shirt and jabbed me in the MS section of it, saying, "good for you! I know so many people who have MS - you know Dan, downstairs?" I shook my head no. He said "Well, he used to be okay, but he's in a wheelchair now..." I told him I had MS and he leaned forward, grabbed my sweaty head and planted a kiss on my cheek. "You poor thing," he said, "God bless you!"
I murmured something about "there are worse things..." and he said "No, this is bad enough. My partner is so ill and she's younger than I am..."
It's like I'm getting a message from the world and the gods that yes, I should be more grateful that I am almost okay (and I am profoundly grateful), and yet, that I shouldn't count on it persisting. Yikes.
July 20, 2010
Well, shoot.
So here I am exercising like a mad fiend, enjoying feeling my body react like a healthy person's would, enjoying the freedom of being able to walk a bit without having to think about it....
Yeah, it's been hot, but I've tried to keep cool, well hydrated, reasonable about activity.
And then it hit me - today - the awful fatigue. It's been creeping up on me the last few days - I've been feeling more of the "nah, don't wanna"s and fewer of the "let's go!"s. I've been crashing asleep in mid sentence and snoring the whole night through. I've noticed a sluggishness in getting up the last two days.
But today - the wall. I dragged myself to my class this AM, worked blindly through it, came home, and too tired to eat, collapsed onto the sofa and slept the day away. I'm still exhausted, since the joy of the MS fatigue thing is that it doesn't get better even after sleep.
I'm frustrated. And fed up. And feeling that same old sense of loss that comes whenever I am reminded that things just don't work properly in my body anymore.
And I'm reminded about why I am not at work. This fatigue was a daily thing when I was working full-time. I was in a fog almost all the time, barely conscious, unable to remember what happened or went on, dragging myself from coffee to coffee to coffee to coffee. And when I'm so tired, I can't think straight. It's like I'm looking out through a tunnel - my vision blurs, my hearing seems less effective, I feel locked in to my interior.
It's a reminder, not a welcome one, but a reminder nonetheless. Life has changed forever.
Now to rest and heal and get myself back on track again....
Yeah, it's been hot, but I've tried to keep cool, well hydrated, reasonable about activity.
And then it hit me - today - the awful fatigue. It's been creeping up on me the last few days - I've been feeling more of the "nah, don't wanna"s and fewer of the "let's go!"s. I've been crashing asleep in mid sentence and snoring the whole night through. I've noticed a sluggishness in getting up the last two days.
But today - the wall. I dragged myself to my class this AM, worked blindly through it, came home, and too tired to eat, collapsed onto the sofa and slept the day away. I'm still exhausted, since the joy of the MS fatigue thing is that it doesn't get better even after sleep.
I'm frustrated. And fed up. And feeling that same old sense of loss that comes whenever I am reminded that things just don't work properly in my body anymore.
And I'm reminded about why I am not at work. This fatigue was a daily thing when I was working full-time. I was in a fog almost all the time, barely conscious, unable to remember what happened or went on, dragging myself from coffee to coffee to coffee to coffee. And when I'm so tired, I can't think straight. It's like I'm looking out through a tunnel - my vision blurs, my hearing seems less effective, I feel locked in to my interior.
It's a reminder, not a welcome one, but a reminder nonetheless. Life has changed forever.
Now to rest and heal and get myself back on track again....
July 19, 2010
What Causes MS? Or where do vaccines figure in all of this?
Just reading a thread on the very helpful site, Patients Like Me, where I routinely go when I want to ask a question that my doc would look at me sideways for asking.
They've been there when I wondered about which treatment to take, when my legs started spasming and no one seemed to think it was a common thing with MS, when I lost sensation. They've been helpful, and they have additional sites for other diseases where fellow sufferers get together and share information. It's great to look up medications and see if others have been prescribed the same things, etc. Awesome resource.
However, it is filled with people who are desperate about MS and also somewhat uninformed. The latest post is filled with suppositions that vaccines caused their MS. Now, we don't know what causes MS, so I can't be SURE they are wrong, but research says it is probably a combination of things - from low vitamin D, to infection with Epstein-Barr disease (mono) after age 15, to stress, to a variety of other things from genetic tendencies to environmental pollution. Maybe vaccines do play a part, but I hate to read these posts.
Why? Because I'm a nurse, and I know what those vaccines prevent - diphtheria, where a thick membrane forms across your throat, disabling your ability to breathe; rubella, where infection during pregnancy results in a deaf, severely congenitally damaged child; polio, which leads to paralysis with first infection and often recurrent paralysis later in life; pertussis, which I've seen kill babies with exhaustion; tetanus, which paralyzes the lungs and can kill. They aren't minor diseases. We've become casual about them because they are now rare, thanks to immunization.
My son is travelling through Asia and caught amebic dysentery. He is taking pills to forestall worse infections: malaria, sepsis from any wounds, etc. But what is primarily protecting him are his immunizations, for hepatitis, yellow fever, etc etc etc. He is wandering safely through a literal morass of germs and creatures all hoping to feast on his remains. As am I, here in safer North America.
We have so many little bugs who are becoming resistant to antibiotics that immunizations are becoming even more important year by year. I take my flu shots. I need to get my tetanus updated (tetanus is in the soil and can getcha anytime - you need a booster every 10 years). I can't prevent my MS or my diabetes or whatever, but I can do what I can to keep myself from being felled from diseases for which we have the prevention available. Why wouldn't I?
I wish I could finger the blame for why I have MS. There isn't any in my family; I don't know why I have been so lucky. Inside myself I blame a bad case of mono in College and my second to last boss, who stressed me to breaking point. But I don't know. It doesn't really matter in the end for me, though I'd like to see the cause identified so it could be prevented for others.
But fear of vaccines has its own dangers...
They've been there when I wondered about which treatment to take, when my legs started spasming and no one seemed to think it was a common thing with MS, when I lost sensation. They've been helpful, and they have additional sites for other diseases where fellow sufferers get together and share information. It's great to look up medications and see if others have been prescribed the same things, etc. Awesome resource.
However, it is filled with people who are desperate about MS and also somewhat uninformed. The latest post is filled with suppositions that vaccines caused their MS. Now, we don't know what causes MS, so I can't be SURE they are wrong, but research says it is probably a combination of things - from low vitamin D, to infection with Epstein-Barr disease (mono) after age 15, to stress, to a variety of other things from genetic tendencies to environmental pollution. Maybe vaccines do play a part, but I hate to read these posts.
Why? Because I'm a nurse, and I know what those vaccines prevent - diphtheria, where a thick membrane forms across your throat, disabling your ability to breathe; rubella, where infection during pregnancy results in a deaf, severely congenitally damaged child; polio, which leads to paralysis with first infection and often recurrent paralysis later in life; pertussis, which I've seen kill babies with exhaustion; tetanus, which paralyzes the lungs and can kill. They aren't minor diseases. We've become casual about them because they are now rare, thanks to immunization.
My son is travelling through Asia and caught amebic dysentery. He is taking pills to forestall worse infections: malaria, sepsis from any wounds, etc. But what is primarily protecting him are his immunizations, for hepatitis, yellow fever, etc etc etc. He is wandering safely through a literal morass of germs and creatures all hoping to feast on his remains. As am I, here in safer North America.
I wish I could finger the blame for why I have MS. There isn't any in my family; I don't know why I have been so lucky. Inside myself I blame a bad case of mono in College and my second to last boss, who stressed me to breaking point. But I don't know. It doesn't really matter in the end for me, though I'd like to see the cause identified so it could be prevented for others.
But fear of vaccines has its own dangers...
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