Call your neurologist on Monday morning and ask for guidance on Vitamin D

There was a common theme at a couple of events I attended recently yet what I heard was nothing new to us, especially if you are reading the news, set up on Google Alerts for Multiple Sclerosis, and hanging out in social media chat rooms. What’s the advice from our favorite neurologists, professors, nurses, MSers, and friends of the MS community?

If you live with MS and are not already taking the "sunshine vitamin", call your neurologist on Monday morning and ask for guidance on Vitamin D.

The benefits of the sunshine vitamin have been talked about for a while and if you cannot relocate to sunny San Diego to absorb more sun rays, it is certainly worthwhile having a conversation with your neurologist about how much Vitamin D to take. Me? I take 50,000 U every week, as prescribed by my awesome neurologist. He monitors me closely and we talk about Vitamin D each time we visit together.

If you cannot relocate to sunny San Diego to
absorb more sun rays, call your neurologist
to talk about the "sunshine vitamin"

More and more research is pointing to the fact that low levels of Vitamin D in our blood is a risk factor for developing MS. Conversely, studies show that in MSers, high levels of Vitamin D may be linked to lower chances of attacks and less severe disability[i]. This sounds amazing to me!

Additionally, it has been suggested that Vitamin D deficiency may impact bone health, as MSers are more prone to osteoporosis. Another concern? MS associated weakness may be associated with low levels of Vitamin D. Also, there’s some talk that low levels of Vitamin D could worsen MS disease process.

I got these bits of info from the “Vitamin D and MS: Implications for Clinical Practice bulletin put out by Allen C. Bowling, MD, PhD via the National Multiple Sclerosis Society (NMSS). Have a read as it contains great info about Vitamin D deficiency, the effects on MS, costs associated with the “sunshine vitamin”, and what to do in clinical practice.

This all being said, incorporating Vitamin D into your life is certainly worth exploring.

5 easy steps to take when considering Vitamin D:

1. Call your neurologist on Monday morning to set up an appointment
2. Read the bulletin about Vitamin D and MS (here) - empower yourself with knowledge
3. Get your blood levels of Vitamin D checked with your neurologist
4. The blood tests and Vitamin D prescription should be covered by insurance yet it’s worthwhile calling your provider to ensure coverage
5. Once on a Vitamin D regimen, monitor, monitor, monitor by working closely with your neurologist. She/he will evaluate your blood levels and give guidance on how much Vitamin D to take

Of course, everyone’s case of MS is different so it is very important that you have discussions with your neurologist about how best to incorporate (or not) Vitamin D into your lifestyle. We know more studies are required to truly understand the fact-based benefits of Vitamin D and several researchers, doctors, et al are seriously committed to analyzing this relationship between the “sunshine vitamin” and Multiple Sclerosis.

I hope this post helps you in your journey.

Take care,

Christie

---

[i] Allen C. Bowling, MD, PhD , “Vitamin D and MS: Implications for Clinical Practice”, Clinical Bulletin via National MS Society

9 cool things that happened in 2014 for treatment and prevention of MS

I am not a doctor nor do I play one on TV. Before trying anything listed below, please consult with your physician or neurologist. Further, this recap is based on info I gathered from exploring other websites including the National Multiple Sclerosis Society’s “Strides Made in 2014 Toward a World Free of MS” published early last month. Be sure to check it out in its entirety because the list of accomplishments is long – hurray for our fight against MS! 

2014 was a pretty great year for those of us living with Multiple Sclerosis. So many amazing things happened in our journey towards treatment and prevention of the disease. We’ve got more drug therapy options, saw great studies come out on myelin repair, identified risk factors for developing MS, and even learned that dance therapy may help those of us living with Multiple Sclerosis.

Without further ado here are 9 pretty cool (and important) things that happened in 2014 for treatment and prevention of MS:

There are now 12 disease-modifying treatment options for those living with RRMS. This is up from 10 options about a year ago. The FDA approved Plegridy and Lemtrada in 2014. This is pretty remarkable because it was not long ago when the choices were so few. Plegridy is injected under the skin every two weeks and designed to lengthen the effect of interferon. Lemtrada is a bi-annual infusion option for those seeking therapy after other MS drugs did not reach desired results. Oh, and the FDA also approved a new and improved Copaxone allowing MSers to inject three times a week vs. every single day. That’s a pretty big win.

Infusing with one of the 12
DMTs now available to
MSers - Tysabri

Statins show promise in slowing brain atrophy in those living with SPMS. Based on trials, this cholesterol-fighting drug slowed the rate of brain atrophy by 43% vs. placebo over a two-year period. Fingers crossed that more studies like this continue and help those living with SPMS.

Smoking continues to be bad for MS health. Building on other studies, researchers in the U.K. found that for every year since quitting smoking, the risk for MS progression reduced 5% (for those living with MS). So glad I quit smoking those many years ago. Cheers to that!

The sunshine vitamin continues to help those living with MS. An international study helped show that analyzing Vitamin D serum levels in early MS may help predict future disease activity and progression. And, those in the study with higher levels of Vitamin D had reduced disease activity and progression vs. those with lower levels. On a personal note, I am on a Vitamin D program prescribed by my neurologist as he feels my levels are too low. Wish me luck for improvement!

There may be something to cod liver oil, too. Studies show that those who took cod liver oil, a source of Vitamin D, during the ages of 13-18 had 50% reduced risk of developing MS (vs. those who never took it or took it at other ages).

Did you know the sunshine
vitamin may help in predicting future
disease activity and progression? 

Researchers continue to explore ways to repair damaged nervous systems. Very smart people all over the world continue to analyze compounds, antibodies, stem cells, molecules, and other elements to find ways to repair myelin damage. Check out the NMSS site linked (here) for more info on these important studies.

Our health data has power! iConquerMS.org is now live and is putting MSers at the center of research in our fight against MS. This is an incredible project that will use health data to help those living with Multiple Sclerosis and to find that eventual cure. Check it out (here).

Taking up Salsa lessons may help MSers. Studies show that the Salsa dance form helps with gait and balance issues for those of us living with Multiple Sclerosis.  Larger studies are being developed now to see how dance can be incorporated into physical therapy programs for MSers. Everybody Salsa!

Biogen hands out Fitbits to some living with Multiple Sclerosis. Biogen hopes get useful data about the progression of the disease and lead to better treatments. To do so, they gave out 250 Fitbit bands to MSers and will analyze mobility and sleep patterns. Read more about it (here).

The list of accomplishments, trends, and other important elements from 2014 is much, much longer than what’s listed above. Please be sure to check out the resources featured at the bottom of this page for more information about everything that is being done for treatment and prevention of MS.

I hope the new year is good for you and yours.

Best always,
Christie

Sources:
“Multiple Sclerosis Year in Review”, Neurology Advisor, 2014 http://www.neurologyadvisor.com/multiple-sclerosis-year-in-review/slideshow/2349/#1
“Strides Made in 2014 Toward a World Free of MS”, National Multiple Sclerosis Society, December 9, 2014 http://www.nationalmssociety.org/About-the-Society/News/Strides-Made-in-2014-Toward-a-World-Free-of-MS

Stop smoking and get some Vitamin D, a theme from ECTRIMS

The sun vitamin has an impact
on the course of our MS
(c) cgermans photography, 2013

One of the three themes discussed during this year’s ECTRIMS (European Committee for Treatment and Research in Multiple Sclerosis) was the “Environmental Triggers” of Multiple Sclerosis. Not surprising, more studies reveal that Vitamin D has an impact on disease course and smoking is really bad for our health, more so for our MS health.

Geez. This makes me wonder, “Good Grief!  Did I get MS because I was addicted to cigarettes for ten years?” Good thing I quite my habit of a pack a day of Marlboro Lights. And, while I am not necessarily getting more sun, I did start taking a daily dose of Vitamin D supplements. Hopefully this gets me on track to lessen the impact of my MS.

So, have a watch of this video, which features three prominent doctors in neurology. Dr. Lublin, Dr. Fox and Dr Wilner discuss the top advances in MS and the most interesting ECTRIMS presentations. You'll have to sign up on Medscape.com to watch the flick but it’s a good update on the chatter of this year’s event. 

Click here to watch the video: Top Advances in MS highlighted from ECTRMIS 2013.

Best always,

Christie

Sources:

Ascherio A, Munger K, White R, et al. Vitamin D as a predictor of multiple sclerosis activity and progression. Program and abstracts of the 29th Congress of the European Committee for Treatment and Research in Multiple Sclerosis; October 2-5, 2013; Copenhagen, Denmark. Abstract 96.

Hedström AK, Hillert J, Olsson T, Alfredsson L. Smoking and multiple sclerosis susceptibility. Program and abstracts of the 29th Congress of the European Committee for Treatment and Research in Multiple Sclerosis; October 2-5, 2013; Copenhagen, Denmark. Abstract 118.

It’s not feasible for me to run around naked

I tried. I really did. Alas, sitting in the sun on my patio for 15-minute intervals twice a day did not fit into my busy schedule. Why would I do this? My Vitamin D levels are too low and, for MSers, this may not be a good thing.

Lots of neuros recommend that we get outside more often, to soak up that important sun vitamin, Vitamin D. They encourage this because a lot of research suggests that increased Vitamin D levels will influence our MS, positively. Yet running around half-naked is not gonna work for me.

Plan B.

4,000 iu/day of Vitamin D tablets. We’ll see what my levels are in three months, per doctor’s orders.

To read more about my story with Vitamin D and sun worshipping, check out this blog post on http://multiplesclerosis.net from a few months ago. Here’s an excerpt:

        “We don’t run around naked as much as we should”

I heard this during the 13th Annual UCSD MS Symposium in San Diego as neurologists fielded questions from the audience about the relationship between vitamin D and multiple sclerosis. And, they weren’t trying to be weird. Rather, these respected doctors encouraged us to monitor our vitamin D levels and get out in the sun more. Nothing new here, though, as we have all seen the same news bulletins: low levels of vitamin D may influence multiple sclerosis. And, there’s the hypothesis that supplementation with vitamin D may have a protective effect... [read more]

In the meanwhile, what has been your experience with the sun vitamin? Do you layout in the sun or take Vitamin D tablets? And, are your Vitamin D levels where you want them to be and, most importantly, how do you feel?

Best always,
Christie

Top 10 things that happened during MS Awareness Month

It’s a wrap! March 2013, MS Awareness Month, is over. And, so many important things happened in the MS community. Like, really big things!

1. The biggest news? The FDA nod for BG-12. Whoop! Whoop! This is going to make a lot of MSers very, very happy. Why? Because this is another oral treatment for RRMS. Read, no injections and no infusions. Be sure to talk with your neuro about this, to see if it’s the right med for you. Good luck with the possibility! P.S. I think they changed the name to Tecfidera, something to be aware of, if you try searching out info on Google.

   

   Whoop, whoop! FDA nods Tecfidera!

2. Jason Da Silva met 100% of his goal to help get his documentary, “When I Walk”, into theaters! Another whoop, whoop! Jason’s film is an emotional and inspirational film about living with MS and disability. It’s an incredible achievement and I, for one, can’t wait to see it!
   
   

   

   "When I Walk" meets 100% of goal! (c) http://www.wheniwalk.com
   
   

   "... honestly, the making of this film helped get me through the past seven years. As my physical body changed, it acted as an emotional and creative support system..." - Jason Da Silva

3. We know a lot more about the relationship between salt and MS. Who knew? Read here about the suggestion that dietary salt can stimulate the development of MS. I know, I know. It’s a study about mice, not people, but still serves as great foundation to fuel additional studies to better understand the correlation.
4. Our friend Kate Milliken is putting emotion first in the MS community through her work on My Counterpane. She’s “… building a tool called the Moodifier for patients and caregivers to connect them by their similar illness and how they feel about it.” If you are interested in supporting this cool project, you may do so here. Neat stuff, right?
5. And, another one of our friends, Amy Gurowitz, has Robbie Benson talking about MS Soft Serve. Amy’s doing great work in rallying support for her project, MS Soft Serve. Please take the time to check out what she’s doing: http://www.mssoftserve.com.
6. The 13^th Annual UCSD MS Symposium in San Diego was a great event that featured two amazing people at the podium. The overall message? First, Dr. Jody Corey-Bloom talked about symptom management, including understanding the side effects of your meds before attributing what you feel to MS. And, second, Dr. Timothy Vollmer talked about new paradigms in MS treatment and advised the audience to “…not treat on where are you today with your MS but based on where you night be at age 65.” Now if I can just get a copy of the presentation. So much good info but impossible to jot it all down in my notebook!
7. Multiplesclerosis.net celebrates huge statistics during its month of debut. This amazing new site reached over 16,000 “likes” on Facebook. Whoa.  Do go out there and check out it out. It’s a great space. And, who knows? You may see a friendly and familiar face...me!

   

   Check out this amazing new site! http://multiplesclerosis.net

   
   
8. One a personal note, my latest MRI showed no new lesions! Yes! Tysabri? Keep up the good work.
9. And, my latest JC Anti Virus test results were negative. Tysabri? Carry on and get down with your bad self.
10. Yet, my vitamin D levels are too low.  This means more 15-minute sun sessions, but certainly not running around naked.  

So as we bid farewell to March 2013 and MS Awareness Month, let’s not end our effort in increasing awareness about Multiple Sclerosis. Let’s continue to get out there, spread the good word about how to live a positive life despite the challenges of this debilitating disease. Let’s continue the dialogue about living with MS. You with me? 

And, if I missed important news this month, jot me a note here on the blog.

Best always,
C.