It seems we always ask whether the glass is half-full or half-empty, but maybe we should start by asking some questions about the glass itself. Is it possible the three-quarters empty glass is a miracle? Seeing it as such might require a willingness to see it as how it is right now while ignoring the leaking cracks in the glass or the angle at which the cup is held. Both could be strong indications the glass will not remain full for all that long, and the view of one quarter full could be quite Pollyannaish.
Here is my hard part as I try to gain perspective. Almost all the new research indicates my MS should be worse. I have been more or less stable symptom wise for some time now. Tysabri has worked well. If my mind is a glass then MS is the event that cracked it. It appears cracked, but thus far still holding water with a minimum of leakage. I guess I should happy my glass is not upside down.
Still recent research shows all kinds of medium to long-term impacts of MS. It appears grey matter damage in MS patients may affect decision-making abilities and more specifically our ability to assess risk. (http://multiple-sclerosis-research.blogspot.com/2013/08/cognitive-impairment-in-ms-affects-risk.html) I know I have somewhat questioned my ability to make decisions on the fly of late, but I take some comfort in my decisions to stay on Tysabri. It was a decision whose logic remains the same as when I started the treatment.
Next week, I will go for my 80th infusion. There is no credible research on taking the drug for as long as I have, but the best guess for my risk of getting PML remain, between 1 in 300 and 1 in 400. My neurologist and I agree looking at the charts that the risks seem to level off in year 4. Now for how long these risks remain level is unknown. Still, the logic was “Give me five good years over 30 crappy ones. If year 6 is bad, we will deal with it then.” The logic still applies, and the risks remain steady. It may be foolish to rely on risks for making life and death decisions, but if one believes in the research above, what better way is there than to use the decision making process from a time before some of the grey matter loss?
Until shown otherwise, I will continue to believe the glass remains solid enough for use even if the cracks are sometimes unsightly.
On the crazy correlation versus causation understanding front, I have seen a study on Iran’s MS rates spiking almost seven fold from 1989 to 2005. (http://www.smithsonianmag.com/science-nature/Is-the-Hijab-Responsible-for-Irans-Spike-in-MS-Cases-204115701.html) It is worth noting, this article does say they are not telling women there to abandon the Hijab. They are merely telling women there to take vitamin D supplements. Granted it appears women there have low levels of vitamin D on average, and it draws the link between the wearing of the Hijab and low levels of vitamin D. I can follow the logic. What I have not seen is a link between getting MS and low levels of vitamin D.
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Certainly low levels of vitamin D increase symptoms in patients. I certainly feel it when I stop taking my vitamin D pills, but I doubt lack of sunlight lead to my getting MS. I played soccer for 20 years with multiple outdoor seasons every year. I played outside daily growing up. In college, I kayaked, hiked and played soccer. I worked as a landscaper in the summers. If anything, I maxed out my body’s ability to absorb vitamin D.
Therefore, I come back to does wearing a Hijab lowering vitamin D levels cause MS or simply bring its symptoms to the forefront. The most common symptom of MS is fatigue. Vitamin D helps energize most of the people I know who take it whether they have MS or not. Could not taking vitamin D alleviate MS’s most common symptom keeping doctors from looking for MS?
I know the increase in accuracy and availability of MRI machines has dramatically increased the ability to diagnose MS, but who looks for MS in non-symptomatic people (outside of researchers looking for a control population)? How much of the spike is due to diagnostic improvements versus real increases in number of patients with MS. I just wonder if lower levels of vitamin D are bringing to the surface what is going on in the brain regardless. Is the damage occurring before the symptoms manifest? Most people I know with MS talk of their first symptoms as a separate event from the flare that lead to a diagnosis.
I do not know if vitamin D is a shield against all MS activity, but I will still keep using it. I know I have MS. That means most of what I take in terms of drugs outside of Tysabri is symptom management. I am just wary of saying taking vitamin D is what has kept the glass from leaking.
Thank you
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Thanks Elys,
I enjoyed reading your blog. I love it when classic literature shapes our view of today’s world.
Isn’t it kind of amazing how people with MS are so different. No two experiences are alike. Yet there s always this common thread running through each story.
I’ve been writing about many of the same themes you address.
http://becomingprime.blogspot.com/
I look forward to reading more from you.
Elys
My contact details are on the right. Simply click on the “About Me” for my g+ profile.
This is a topic which is near to my heart…
Thank you! Exactly where are your contact details though?
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