I haven’t posted in quite a while. I just read this and it appears to be something new:
This looks like early stage research, but it’s an approach that I’ve not read about before.
Category: <span>MS Research</span>
Looking for a way to help advance knowledge about Multiple Sclerosis Caregiving? I know a way.
I have just completed an online survey which is sponsored by the National Alliance for Caregiving and the National Multiple Sclerosis Society. The survey took me about 20 minutes and was not difficult.
Here’s the survey link: www.sirresearch.com/MScaregiver
The study is investigating issues related to caring for someone with MS and the needs of family and friend caregivers. This research is NOT about professionally-paid caregivers.
The survey is completely anonymous and confidential. It did not ask for my name or contact information. Responses will be combined with those of other caregivers and will be shared with the National Alliance of Caregiving and the National Multiple Sclerosis Society so they can learn how to better meet the needs of those caring for people with MS.
If you are a family or friend caregiver for a Multiple Sclerosis patient and wish to assist with this anonymous research, click here: www.sirresearch.com/MScaregiver
If you wish to participate, please do so by Friday, October 21, 2011.
www.sirresearch.com/MScaregiver
I was surprised that completing the survey helped me become a bit objective about an emotion-laden topic. Try it!
It’s an odd thing I sometimes consider. (Trust me, I’m not crazy) – but once or twice a year I wonder, what if the neurologists are wrong? What if my wife doesn’t have Multiple Sclerosis? What if she has something that looks like MS but isn’t as bad?
I know it’s wishful thinking. And I know why I wonder. I so want her MS to be something else – something that has a cure. Something that isn’t “progressive” (and isn’t that such a sadly ironic word for a disease).
When I first start to wonder, I find it easy to feel hopeful. MS is one of those odd diseases that seems to take forever to diagnose. It took a lot of visits to doctors and a lot of tests to get a firm diagnosis. The diagnostic process sets one up for doubt.
On the other hand, take a normal health problem.
If you break a bone, you usually remember exactly how it happened. You go to the ER and the doctor looks at your arm and says, “looks like you’ve broken your arm.” Or maybe the diagnosis requires an X-ray. The doctor pops it on the light board, looks at it and says, “yep, look here, you’ve broken your arm, here’s a cast, you’ll heal just fine.”
MS is so unlike that.
When we were told the diagnosis, I told the doctor, “I don’t think that’s it. What else could it be?”
It was a desperate question. “What else could it be?” At the time, I was aware of only one person who had MS. He had been in a wheelchair for years.
Even now, ten years later, I still find myself asking, what else could it be? And after a decade of asking, I see the symptoms, I re-read the lab reports, and I know the truth. It’s MS.
I’ve not talked to anyone about this wishful thinking because it seems irrational. I have a logical mind. I have the evidence and it’s conclusive. Yet some part of me hangs on to the impossible chance that after a visit to her neurologist, the doctor will report with a smile, “Wait, we’ve been wrong! It’s not MS! It’s disease X, Y or Z and it has a cure!”
In case you’ve wondered – and I imagine there are MS caregivers who find themselves wondering as I occasionally do – I’ll share a link to an article on diagnosing Multiple Sclerosis and how other diseases are ruled out through something called differential diagnosis. It serves as a useful anchor to medical reality for me.
Accessing the article requires that you register for a free subscription to the online “Journal of Neurology, Neurosurgery & Psychiatry with Practical Neurology“. You will be prompted to login or register. The article is “MAKING THE DIAGNOSIS OF MULTIPLE SCLEROSIS” by Dr. J. Palace.
When you find yourself wondering about the diagnosis, you have a few options:
1) You can ignore the wondering. However, if you do, it will always be there in the back of your mind. It’s better to address it.
2) You can always talk with the doctor and ask her or him to walk you through the diagnostic information again.
3) And finally, if you already have the irrefutable evidence and just wonder as I occasionally do, call it what it is: wishful thinking. Everyone is entitled to a little wishful thinking every once in a while.
However, avoid letting your wishful thinking distract you from reality. Reality is where you must live, move and have your being. MS is what it is. You’re a caregiver, so take good care.
(As an aside, if you’re interested in reading about research into MS, the free subscription to the online “Journal of Neurology, Neurosurgery & Psychiatry with Practical Neurology” is a great deal. The journal articles and study results are excellent.)
The front page of online version of The New York Times has a link to “From M.S. Patients, Outcry for Unproved Treatment“. It reports on Multiple Sclerosis and CCSVI (aka Chronic Cerebrospinal Venous Insufficiency) providing information about patients and doctors who are trying the “liberation procedure”.
The most sobering sentence? “These critics warn that multiple sclerosis has unpredictable attacks and remissions that make it devilishly hard to know whether treatments are working — leaving patients vulnerable to purported ‘cures’ that do not work.”
I hang on to hope with the resignation of a skeptic and await solid science.
If you’ve ever wondered how new Multiple Sclerosis drugs are developed, evaluated, and finally approved for the market, Bloomberg.com offers a link to the video of the FDA Committee Meeting on Novartis’s new Gilenia, the first pill for Multiple Sclerosis.
After drug testing and before the FDA approves a new medication, a panel of health experts considers the drug studies and, if the panel is satisfied, recommends approval to the FDA for approval. The FDA usually does as the panel suggests.
The panel reviewing Gilenia recommends it as safe and effective for controlling tremors, concentration problems and other symptoms of relapsing remitting MS.
If the medication’s side effects do not derail the FDA’s approval later this year, Gilenia will be a welcomed medication for MS patients because it is the first MS treatment available in pill form. Approval would mean no more routine injections or infusions for those who take it — no more needles or injection site reactions.
Reported side effects of Gilenia include eye disorders, heart problems and lung problems. In spite of these, the panel recommend approval of the drug for the treatment of Multiple Sclerosis.
With each medication they choose to take, MS patients are faced with the persistent question, “Will my MS treatment be worse for me than the long term effects of the disease?” Because this is a new medication, there really isn’t an answer to this question yet. Not enough people have taken it for enough time for researchers to know the long term effects.
In light of the side effects, the panel did recommend Novartis study the effectiveness of lower doses of Gilenia.
More information about Gilenia:
Hello Cancer, Goodbye Marriage: A new study shows that men are more likely to ditch their sick spouses, should really be titled, “Hello Illness, Hello Marital Stress”.
The authors, Barbara Kantrowitz and Pat Wingert, are reporting on an article in the November 2009 issue of Cancer, titled, “Gender disparity in the rate of partner abandonment in patients with serious medical illness”. Of course, the research article’s abstract begins by stating the obvious, “Life-threatening illness creates severe stress that may result in marital discord, separation, or divorce and may adversely impact treatment, quality of life, and survival.”
While the Newsweek summary of the findings focuses on couples where one partner has cancer, the original study is of 515 patients: 214 have a malignant brain tumor, 193 have a serious brain tumor with no nervous system involvement and 108 have multiple sclerosis. All were married at the time of diagnosis.
Because Newsweek has summarized the finding of the Cancer article, I’ll not do that again here. I’ll merely point out the obvious: caring for a spouse who has a severe illness is stressful and disrupts marital relationships. Unless one marries a partner who has already been diagnosed, it may be impossible to understand the implications for one’s future which is contained in the small phrase, “in sickness and in health”.
I may comment on this study again in the future because I think it describes a phenomenon that is so very important for multiple sclerosis caregivers to appreciate. And because I know it is possible to build a stronger marriage – even as the chaotic effects of Multiple Sclerosis bang against your marital relationship.
And as fascinating and accessible as the Newsweek article may be, the readers comments to the Newsweek article are worth studying all by themselves. People have a lot of emotion about the issue of spouse abandonment: http://www.newsweek.com/id/223079/output/comments
A few tears caught me off guard early this morning. They slipped down my cheek while I read, of all things, a newsletter from a neurological clinic.
If you know someone with Multiple Sclerosis, you’ll want to read the newsletter, too, and learn about the CCSVI research that is being done at the Buffalo Neuroimaging Analysis Center. (I’ll offer a link to the newsletter at the bottom of this post.)
The tears weren’t because the article described a brilliant research technique or procedure. Although, the research is incredibly significant. Nor were the tears because of fancy wordsmithing on the part of the author.
A simple thing happened.
As I read the article about CCSVI, I felt the feather-light touch of potential hope. My heart swelled and my brain shouted, “I want my wife healed!” And my eyes dripped with the hope.
Then, of course, there’s reality. It’s still too early to know whether CCSVI causes MS. Nor does anyone know yet what the best treatment will be if CCSVI is determined to be the cause.
While the research continues, here’s what I do know.
I know I hate that she self-administers injections without any obvious return. I hate that she’s more miserable when she takes the treatments hoping to forestall future decline, than when she doesn’t and risks accelerated decline.
I hate that she has trouble walking and can’t run, that words don’t pop out quickly the way they once did. I hate that she has no stamina and that she takes medicines without immediate reward. I hate that she wakes most days with intense headaches. I hate that she can never go as far she wants for as long as she wants.
I hate Multiple Sclerosis. I flat-out, passionately hate it.
And so with tears behind my eyes, I pray the researchers exploring CCSVI are close to finding answers to questions about the cause. And I pray real, effective treatments will follow.
I’m waiting with tears behind my eyes.
Newsletter link (PDF File): Buffalo Neuroimaging Analysis Center CCSVI Newsletter
If you’ve paid attention to information on the internet related to Multiple Sclerosis this month, you’ve certainly seen references to CCSVI or Chronic Cerebospinal Venous Insufficiency as a proposed of Multiple Sclerosis.
“Chronic Cerebrospinal Venous Insufficiency” is the name given by Dr. Paolo Zamboni to the backward flow of blood into the brain due to constricted veins which should drain blood from the brain. Dr. Zamboni is the Director of the Vascular Diseases Center at the University of Ferrara in Italy.
It’s too early to know whether CCSVI will be found to cause Multiple Sclerosis, but researchers are focusing their attention on it.
A good introduction to CCSVI is found in today’s BuffaloNews.com in an article titled, “Study could hold key to MS treatment”. Dr. Robert Zivaidinov is the Director of the Buffalo Neuroimaging Analysis Center and the principal investigator of the first major study of Dr. Zamboni’s controversial new theory that blockage in the veins that drain the brain cause Multiple Sclerosis.
Dr. Zamboni’s theory is controversial because it stands against the current assumption that MS is an autoimmune disease. The treatment of choice if Zamboni is correct is apparently angioplasty of the brain veins. This has been referred to as ‘liberation therapy’.
Important things to remember
First, while one is tempted to become excited about a potential cure for MS, I recommend against it. A lot of theories and potential treatments have been ruled out. Many more are currently being tested. If you had become excited about each, so far, you would have been disappointed by each.
Second, remember that a “cure” for MS will probably not undo the damage already done to the brain by Multiple Sclerosis … whatever the cause. “Cure” simply means an end to the disease process and progression.
Finally, if Dr. Zamboni’s hypothesis is found valid after further research, I imagine some pharmaceutical companies may have some explaining to do.
Here are links to additional information about CCSVI:
Study could hold key to MS treatment
New York researchers testing MS theory
MS Anger and Chronic Cerebrospinal Venous Insufficiency (with Video and Diagrams)
National MS Society Article with Questions and Answers