I intend this blog to be a mixture of my personal experiences with Multiple Sclerosis (MS) and news related to MS. Hopefully, I can shed an optimistic light on MS even though it is difficult to be an optimist living with MS.

Monday, May 30, 2011

Happy Memorial Day!

Happy Memorial Day!  Today we remember those who died fighting for our country, our freedom.  Thank you to all who have served and are serving!  Today, I not only remember those who died in battle, but also those who served and have since passed, such as my grandfather who served in WWII.  Today, I also remember other loved ones who have passed.  Let your flag fly today and show your patriotic side! 

"Ragged Old Flag" by Johnny Cash

I walked through a county courthouse square
On a park bench, an old man was sittin' there.
I said, "Your old court house is kinda run down,
He said, "No, it'll do for our little town".
I said, "Your old flag pole is leaned a little bit,
And that's a ragged old flag you got hangin' on it".
He said, "Have a seat", and I sat down,
"Is this the first time you've been to our little town"
I said, "I think it is"
He said "I don't like to brag, but we're kinda proud of
That Ragged Old Flag"

"You see, we got a little hole in that flag there,
When Washington took it across the Delaware.
and It got powder burned the night Francis Scott Key sat watching it,
writing 'Say Can You See'
It got a bad rip in New Orleans, with Packingham & Jackson
tugging at its seams.
and It almost fell at the Alamo
beside the Texas flag,
But she waved on though.
She got cut with a sword at Chancellorsville,
And she got cut again at Shiloh Hill.
There was Robert E. Lee, Beauregard and Bragg,
And the south wind blew hard on
That Ragged Old Flag"

"On Flanders Field in World War I,
She got a big hole from a Bertha Gun,
She turned blood red in World War II
She hung limp, and low, a time or two,
She was in Korea, Vietnam, She went where she was sent
by her Uncle Sam.
She waved from our ships upon the briny foam
and now they've about quit wavin' her back here at home
In her own good land here She's been abused,
She's been burned, dishonored, denied an' refused,
And the government for which she stands
Has been scandalized throughout out the land.
And she's getting thread bare, and she's wearin' thin,
But she's in good shape, for the shape she's in.
Cause she's been through the fire before
and I believe she can take a whole lot more."

"So we raise her up every morning
And we take her down every night,
We don't let her touch the ground,
And we fold her up right.
On second thought
I do like to brag
Cause I'm mighty proud of
That Ragged Old Flag" 

Sunday, May 29, 2011

Fun in the Sun

Spent some time at the zoo today with my nephews and soaked up some vitamin D!  So I thought I would share some more information on vitamin D.

First, I recently read this article about "the new rules of sun safety" that included stuff about using sunscreen and covering up when in the sun, but it also contained this little tidbit:
Old rule: A little sun is healthy—20 minutes three times a week allows your body to produce vitamin D.
New rule: It’s not smart to go out-of-doors unprotected.

Here’s the deal: Your body does need vitamin D to keep bones healthy and support your immune system, but supplements are the safest way to get your dose of D—without the scary side effects of sun exposure. "Even a little bit of sun causes cellular damage that can lead to aging and cancer," says Francesca Fusco, MD, a dermatologist in New York City. Have your doctor check your D level; if it’s low, discuss taking a daily supplement containing 400 to 1,000 IU.
I find this to be a little interesting because it is my understanding that the vitamin D produced via sun exposure is absorbed by your body better than supplements.  I don't disagree that you should wear sunscreen and protect yourself when in the sun because of the risk of skin cancer, however, I think that spending time in the sun, soaking up that oh-so-important vitamin D, can be beneficial to everyone, especially MSers.

The most recent NMSS magazine (Momentum) contained an article about vitamin D (you can read the article here).  Here is what I took from the article:
  1. The Institute of Medicine ("organization that establishes appropriate dietary intake values for vitamins and minerals") established a "sufficient" level of vitamin D which is likely too conservative, especially for MSers.  Their recommended daily intake amount is 600-800 IUs, which some professional organizations, physicians and scientists feel is too low.
  2. Vitamin D "has effects in nerve, muscle, and immune cells that could potentially affect the disease process of MS.
  3. Vitamin D deficiency is associated with an increased risk and increased disease severity of MS (as well as diabetes and rheumatoid arthritis), muscle weakness, and an increased risk of falls; it may also increase the risk or severity of heart disease and multiple forms of cancer.
  4. High doses of vitamin D (50,000 IU or more daily) "may trigger high blood calcium levels, impaired kidney function and other serious side effects."
  5. The "Tolerable Upper Intake Level" for adults is 4,000 IUs daily
  6. Although we don't know certainties, it appears as though vitamin D may have important implications for MS, so MSers should get your vitamin D levels tested (I got mine tested and my levels were low) and discuss appropriate action to take with your doctor if your levels are low (caveat: I am no doctor, this is just my personal opinion).
 Also, after reading about "the new rules of sun safety," I learned that there is a product that you use when washing your clothes that somehow washes 30 SPF into all of your clothing.  It is called SunGuard, check it out here.  Very interesting!

Hopefully, I will get to soak up some more vitamin D tomorrow, I think my husband and I are going to do some Memorial Day grilling! 

Wednesday, May 25, 2011


Today is World MS Day, a day to raise awareness about MS and celebrate those who work so hard to educate others about MS.  I hope that I am doing my part in raising awareness through this blog and my work with the National MS Society!

The MSAA has developed an MS App!  The MY MS MANAGERTM App is now available to download for FREE!  My MS ManagerTM is MSAA's new mobile phone application, provided free of charge to individuals with multiple sclerosis or their care partner to use on their iPhone, iPad or iPod touch.
This app offers individuals a convenient and effective tool to manage the ever-changing course of the disease.
My MS ManagerTM allows you to input and store:
  • Comprehensive medical records
  • Contact information of your healthcare team
  • Descriptions of MS flare-ups, tracking their duration, frequency and intensity
  • Information about side effects and effective treatment strategies
  • Important details essential to staying one step ahead of your MS
So if you have an iPhone, iPad or iTouch, you can download the App by visiting this website.

More news linking low Vitamin D levels to MS - this article is from the NMSS website:
African Americans with MS have significantly lower levels of vitamin D than African Americans who do not have MS, says a new study, but these levels are not linked to disease severity. The authors conclude that larger studies of diverse populations are necessary to fully understand the relationship of MS and vitamin D. Jeffrey Gelfand, MD, Ari Green, MD, and colleagues (University of California, San Francisco) report their findings in Neurology. The study was funded by a National MS Society/American Academy of Neurologist Clinician Scientist Award to Dr. Green, and a research grant funding genetic studies in ethnically distinct populations to Jorge Oksenberg, PhD.
Background: A number of genetic and environmental factors influence whether a person will get MS.  These factors may also impact the severity of the disease. Research is increasingly pointing to a reduced level of vitamin D in the blood as a risk factor for developing MS. In lab mice, vitamin D can reduce the effects of EAE, an MS-like disease. The National MS Society is funding several projects in this area, including a new clinical trial getting underway to test whether vitamin D can reduce disease activity in people who have MS.
African Americans are at increased risk for having low vitamin D levels, possibly because melanin, which determines the level of pigment in the skin, acts as a filter of ultraviolet (UV) light, limiting the amount of vitamin D that can be produced by the body in response to sunlight. Generally, the risk of MS in African Americans is around half that of Caucasian Americans. This team previously reported that African Americans tended to have a more aggressive course of disease than Caucasian Americans, were at higher risk for developing mobility impairments, were more likely to develop MS later in life, and were at higher risk for having symptoms restricted to the optic nerve and spinal cord (Neurology 2004;63[11]:2039-45). For this study  they examined vitamin D levels in African Americans with MS to determine any connection between these levels and disease severity in this population.
The Study: The team studied 339 African Americans with MS and 342 African American controls without MS, recruited through the African American MS Genetics Project led by Drs. Oksenberg and Dr. Bruce Cree MD, PhD. Detailed clinical and genetic information was available for the participants, as well as blood samples. Researchers looked at vitamin D levels in the blood, the severity of the disease, the amount of ultraviolet exposure for participants based on where they lived, and the proportion who had European genetic ancestry.
Of the group with MS, 77% were deficient in vitamin D, compared to 71% of those without MS. There was no association between vitamin D levels and disease severity. People with MS were exposed to less UV radiation than those without MS and lived about one degree of latitude farther north. People with a higher proportion of European genetic ancestry were less likely to have low vitamin D levels than people with a lower proportion of European ancestry. The link between low vitamin D levels and MS was weaker, but still existed after adjusting for these differences.
This study adds accumulating data of a link between MS risk and lower levels of vitamin D. The authors conclude that larger studies of diverse populations are necessary to fully understand the relationship of MS and vitamin D.

I also recently read an article in the NMSS magazine, Momentum, that I will share with you all soon!  Hope everyone has a Happy World MS Day!

Monday, May 23, 2011


I have been very tired lately, exhausted actually.  I am not sure whether it is because I have been very busy at work, or not sleeping well, or if I am experiencing fatigue (an MS symptom).  Maybe it is a combination.  I haven't felt like I've slept really well in a while and work has my stress levels up, so it may not be the MS, but I wish it would stop.  I have little to no energy to even post on this blog, which is really pathetic because it isn't as though it takes a whole lot to do a little research and some typing.  That is how I have been feeling though, so I apologize for the delays between posts.  I will try to do better.

On another note, Wednesday (5/25) is WORLD MS DAY!  How will you celebrate? 

Wednesday, May 18, 2011

Last Post about Recent MSF Mailer

Ok, so this will be the last (but not least) installment of the recap of the recent MSF mailer I received.  First, mono + vitamin D deficiency may = MS:
New research suggests that people who are exposed to low levels of sunlight coupled with a history of having a common virus known as mononucleosis may be at greater odds of developing MS than those without the virus.
"MS is more common at higher latitudes, farther away from the equator," said George C. Ebers, M.D., with the University of Oxford in the United Kingdom and a member of the American Academy of Neurology. "Since the disease has been linked to environmental factors such as low levels of sun exposure and a history of infectious mononucleosis, we wanted to see whether the two together would help explain the variance in the disease across the United Kingdom."
Infectious mononucleosis is a disease caused by the Epstein-Barr virus, which is a Herpes virus that is extremely common but causes no symptoms in most people. However, when a person contracts the virus as a teenager or adult, it often leads to infectious mononucleosis.
The body makes vitamin D when exposed to ultraviolet B (UVB) light.
For the study, researchers looked at all hospital admissions to National Health Service hospitals in England over seven years. Specifically, they identified 56,681 cases of MS and 14,621 cases of infectious mononucleosis. Scientists also looked at NASA data on ultraviolet intensity in England.
The study found that adding the effects of sunlight exposure and mononucleosis together explained 72 percent of the variance in the occurrence of MS across the United Kingdom. Sunlight exposure alone accounted for 61 percent of the variance.
"It's possible that vitamin D deficiency may lead to an abnormal response to the Epstein-Barr virus," Ebers said.
He noted that low sunlight exposure in the spring was most strongly associated with MS risk.
"Lower levels of UVB in the spring season correspond with peak risk of MS by birth month. More research should be done on whether increasing UVB exposure or using vitamin D supplements and possible treatments or vaccines for the Epstein-Barr virus could lead to fewer cases of MS."
The research is published in the April 19, 2011, print issue of Neurology, the medical journal of the American Academy of Neurology.
If having mono as a teen and having low levels of vitamin D do equate to an MS diagnosis, then that would help to explain my diagnosis.  I had a pretty severe case of mono when I was a junior in high school (so bad that my spleen had enlarged to the point that the doctor was worried that the slightest blow to that area of my body would rupture my spleen).  Also, I recently got my vitamin D levels checked after learning about the potential impact of vitamin D on MSers and my levels were low.  I have been taking supplements and hopefully in a year, my levels will be up.  I find this "discovery" to be so interesting; I would love to know how many people living with MS had mono when they were younger.

For those MSers who have issues with balance, this BalanceWear vest may be the answer (or at least helpful):
Have balance and walking difficulty? The newly introduced BalanceWear® Therapeutic Garment utilizes Balance-Based Torso Weighting® (“BBTW®”), a novel technique used by some physical therapists to improve balance and mobility. The technique, which requires you to wear a customized, strategically weighted garment utilizing small, unobtrusive weights, is adjusted specifically to your body. BalanceWear is currently available in California, New York, Wisconsin, Delaware, Connecticut, and North Dakota with additional states being added constantly.
Individuals for whom the BalanceWear vest is recommended by a physical therapist certified in its use, can apply for funding through the MSF to pay for the entire cost of the garment.
To find a certified therapist near you, contact Motion Therapeutics, Inc., developers of the BalanceWear Therapeutic Garment, at 805-278-BBTW (2289).
To learn more about how this technology may help you, visit http://www.motiontherapeutics.com/.
Last, but not least, the makers of teriflunomide are recruiting patients for their clinical trials (Phase III - Teiflunomide vs. Placebo), the qualifications are listed below:
This study is recruiting in locations nationwide. The primary objective of this study is to demonstrate the effect of teriflunomide (14 mg/day and 7 mg/day) compared to placebo for reducing conversion of patients presenting with their first clinical episode consistent with MS to clinically definite MS.
It is an international, multi-center, randomized, double-blind, placebo-controlled, parallel group study and is designed to evaluate the efficacy and safety of two year treatment with teriflunomide.
Qualified participants will be between the ages of 18 and 55, male and female. Other inclusion criteria:
People with a first acute or subacute, well-defined neurological event consistent with demyelination (such as optic neuritis confirmed by an ophthalmologist, spinal cord syndrome, brainstem/cerebellar syndromes.)
Onset of MS symptoms occurring within 60 days of randomization.
A screening MRI scan with two or more T2 lesions at least 3 mm in diameter that are characteristic of MS.
For more information go to http://click.icptrack.com/icp/relay.php?r=28288047&msgid=399143&act=X8WI&c=263560&destination=http://www.clinicaltrials.gov/ and search for identifier number NCT00622700.
I have been getting a lot of information lately that I want to share.  The newest Momentum magazine has an interesting article about Vitamin D and everyone seems to be reporting about the promising progress BG-12 and Laquinimod are making in their clinical trials.  I will try to post again soon! 

Saturday, May 14, 2011

More From The MSF Mailer

Here is more news from the MSF Mailer I recently received.  In addition to the news about Gilenya and CCSVI  (See MS News Never Stops), the mailer discussed a number of other topics.  Including, news that BG-12 appears to be showing positive results in its clinical trials:
Though detailed data has not yet been released, Biogen Idec has reported “top-line” results  from the first phase three trial to evaluate the investigational oral compound BG-12 (dimethyl fumarate) as a monotherapy in people with relapsing-remitting multiple sclerosis (RRMS).
Results of the DEFINE trial showed that 240 mg of BG-12, administered either twice or three times a day, met the primary study endpoint, demonstrating a “highly statistically significant reduction” in the proportion of people with RRMS who relapsed at two years compared with placebo, Biogen said.
The company noted that both doses of BG-12 also provided a “statistically significant” reduction in annualized relapse rate, in the number of new or newly enlarging T2 hyperintense lesions, in new gadolinium-enhancing lesions, and in the rate of disability progression as measured by the Expanded Disability Severity Scale (EDSS) at two years.
Initial data from the trial showed that BG-12 demonstrated a favorable safety and tolerability profile, according to Biogen. The overall incidence of adverse events and serious adverse events was similar among the placebo group and both BG-12 treatment groups. The safety profile was consistent with what was seen in the published phase two study of BG-12. Further analyses of the DEFINE study are ongoing, and the company anticipates presenting detailed data at a future medical meeting.
Data from scientific studies suggest that BG-12 has the potential to be distinctive by reducing the entry into and the action of inflammatory cells on the central nervous system (CNS), as well as potentially protecting CNS cells from oxidative stress and death by activation of a critical pathway.
BG-12 received Fast Track designation from the U.S. Food and Drug Administration (FDA) in 2008. In addition to DEFINE, another phase three RRMS clinical trial, CONFIRM, is currently underway. This study is evaluating BG-12 and glatiramer acetate, against placebo.  Clinical relapse, magnetic resonance imaging (MRI) measures of MS, progression of disability, and safety will be recorded. Results from CONFIRM are expected in the second half of 2011.

The mailer also, discussed the exciting progress laquinimod is making in its clinical trials:
The drug laquinimod reduced the number of relapses for people with MS in a large, long-term Phase III clinical study that was presented as late-breaking research at the 63rd Annual Meeting of the American Academy of Neurology, April 9–16, 2011, in Honolulu.
The study, supported by Teva Pharmaceticals, involved 1,106 people with relapsing-remitting MS in 24 countries. The participants received either a once-daily oral dose of 0.6 milligrams of laquinimod or a matching placebo for two years. Eighty percent of those taking laquinimod and 77 percent of those taking the placebo finished the two-year study.
Participants treated with laquinimod experienced a statistically significant reduction of 23 percent in annual relapse rate, compared to participants treated with a placebo. Additionally, there was a reduction of 36 percent in disability progression, as well as a 33 percent reduction in brain atrophy for those treated with laquinimod.
“These exciting results confirm that laquinimod has a significant impact on progression of disability and disease activity, while maintaining a high safety profile,” said lead author Giancarlo Comi, M.D., director of the Department of Neurology and Institute of Experimental Neurology at the Scientific Institute and University Vita-Salute San Raffaele in Milan, Italy.
“This may be attributed to the novel mechanism of action of laquinimod, which effectively and safely addressed both the acute inflammatory activity and the accumulation of irreversible tissue damage. This suggests a substantial future role for laquinimod in the treatment of MS.”
Laquinimod was safe and well tolerated, according to the study authors. Overall frequencies of adverse events were low and comparable to those observed in the placebo group. “The incidence of liver enzyme elevation was higher in laquinimod treated patients,” said Comi. “However, these elevations were temporary, reversible, and did not lead to any signs of liver problems.”
Great to hear that such promising progress is being made on more oral therapies!

There was also information in the mailer regarding the research that may have discovered the driving force behind MS and may be on track to find a cure:
Neuroscientists have reported identifying a driving force behind autoimmune diseases such as MS, and suggest that blocking this cell-signaling molecule is the first step in developing new treatments to eradicate these diseases.
Researchers led by Abdolmohamad Rostami, M.D., Ph.D., Professor and Chairman of the Department of Neurology at Jefferson Medical College of Thomas Jefferson University, found that GM-CSF, which stands for Granulocyte-macrophage colony-stimulating factor, appears to be the key culprit in the onset of MS. Without GM-CSF, T helper 17 cells (Th17) cells did not induce the MS-like disease in an experimental animal model.
These findings were recently published in an advanced, online publication of Nature Immunology.
Th17 cells have been shown to play an important pathogenic role in humans and experimental models of autoimmune diseases, but the mechanisms behind this have not been understood until now.
"There was no connection between GM-CSF and Th17 cells before," said Dr. Rostami. "What we have shown in this paper is that GM-CSF
"Now we know how the Th17 cells work and a better understanding of this mechanism and biology leads to new therapeutics," he adds.
The results suggest that blocking GM-CSF activity may be a successful therapeutic strategy in MS, one of the most common neurological diseases affecting young adults, and other autoimmune diseases, said Dr. Rostami, who is also the Chair of Neurology at Thomas Jefferson University Hospital.
These findings identify the interleukin-23 (IL-23)/ Th17/GM-CSF axis as the major pathway in pathogenesis of autoimmune central nervous system inflammation and likely other autoimmune diseases. IL-23, a known cytokine that causes autoimmune inflammation of the brain, induces production of more GM-CSF in Th17 cells, the researchers explain.
Dr. Rostami, who is also director of the Neuroimmunology Laboratory in the Department of Neurology at JMC, and his colleagues used an animal model of MS called experimental autoimmune encephalomyelitis (EAE) for the investigation, a common model used to study the pathogenesis of the disease. Mice whose Th17 cells cannot produce GM-CSF did not develop neuroinflammation, thus GM-CSF is responsible for disease manifestation in this experimental model.
Another recently published paper in Nature Immunology by Dr. Rostami and his team unraveled a mechanism that may help fight MS. The researchers found that a protein known as interkeukin-27 (IL-27) helped block, not induce, the onset of symptoms in animals with an MS-like disease. While increasing levels of GM-CSF may cause the disease, as shown in the current paper, increasing IL-27 concentrations may help quell an over-active immune system, the researchers reported.
For more about this topic, see Research Only Ends with a Cure.  There were a few other topics discussed in the mailer, which I will discuss in the third and final series of the MSF Mailer news update.

In other news, I went to my first NMSS Advisory Board meeting and am going to continue to attend (making me an Advisory Board member)!  I am so excited to be more involved in the fight against MS!  Looking forward to helping out in any way that I can.

And a quick update on me: still feeling well - no everyday symptoms.  I still experience some minor "flare-ups" when I get my core temperature up, but otherwise I am doing well!  I am playing volleyball again tomorrow and I am going to try to play co-ed softball this summer (hopefully the heat doesn't get to me too much).  I'll keep you updated!

Tuesday, May 10, 2011

MS News Never Stops

News from the Multiple Sclerosis mailer that I get included good news regarding Gilenya:
A new analysis demonstrated that Gilenya (fingolimod) reduced the risk of disability progression in people with relapsing-remitting multiple sclerosis (RRMS), regardless of treatment history. This analysis of the phase III two-year FREEDOMS study was presented at the 63rd annual meeting of the American Academy of Neurology (AAN).
In the two-year FREEDOMS study, Gilenya reduced relapses by 54 percent compared to placebo. Also, Gilenya showed a 30 percent reduction in the risk of three-month confirmed disability progression as compared to placebo over two years.
The FREEDOMS analysis presented this week at AAN showed that 0.5 mg Gilenya-treated participants who were new to therapy had a 37 percent reduction in the risk of three-month confirmed disability progression compared to placebo. For those previously treated with alternate therapies, Gilenya 0.5 mg led to a 30 percent reduction in risk.
And news that a recent study cast doubt on the theory that CCSVI causes MS (I never believed that it actually caused MS, but there definitely seems to be some relation / correlation and the CCSVI procedure definitely seems to help some MSers):

A just-released study on the relationship between MS and chronic cerebral venous insufficiency (CCSVI) found that CCSVI may be a result of MS, not a cause, according to researchers.
A narrowing of the extracranial veins that restricts the normal outflow of blood from the brain, CCSVI has been a much-discussed topic in the MS community and among healthcare providers since it was first publicly described as a possible cause of the disease in October 2009.
The study, conducted by University at Buffalo (UB) researchers, appears in the current issue of Neurology, the journal of the American Academy of Neurology. Robert Zivadinov, M.D., Ph.D, associate professor of neurology in the UB School of Medicine and Biomedical Sciences and president of the International Society for Neurovascular Disease, is first author on the paper.
"Our results indicate that only 56.1 percent of MS patients and 38.1 percent of patients with a condition known as clinically isolated syndrome (CIS), an individual's first neurological episode, had CCSVI.
"While this may suggest an association between the MS and CCSVI, association does not imply causality. In fact, 42.3 percent of participants classified as having other neurological diseases (OND), as well as 22.7 percent of healthy controls involved in the study, also presented with CCSVI.
"These findings indicate that CCSVI does not have a primary role in causing MS," says Zivadinov. "Our findings are consistent with increased prevalence of CCSVI in MS, but substantially lower than the sensitivity and specificity rates in MS reported originally by the Italian investigators."
The results of the UB study are based on 499 participants in the Combined Transcranial and Extracranial Venous Doppler Evaluation (CTEVD) study, which began at the university in April 2009.
Prevalence rates were calculated in three groupings: only subjects with positive and negative CCSVI diagnoses; only borderline cases included in the negative group; and subjects who fulfilled any of the five criteria.
When only positive and negative CCSVI cases were considered, results showed a CCSVI prevalence of 62.5 percent in MS patients, 45.8 percent in those with OND, 42.1 percent in CIS, and 25.5 percent in healthy controls.
When borderline cases were included as negative for CCSVI, prevalence figures were 56.1 percent in MS patients, 42.3 percent in those with OND, 38.1 percent with CIS, and 22.7 percent in healthy controls.
The mailer also discussed BG12, Laquinimod, Medical Marijuana for MSers, Teriflunomide, and other topics.  I will discuss these issues in later posts. 

On another note, I was invited to be a member of my local NMSS chapter's Advisory Board.  I am very excited to attend a meeting tomorrow!  I can't wait to be more involved with the organization and I hope to bring something to the table!  Anyone have any great ideas for fundraisers or other events to promote awareness?

Sunday, May 8, 2011

What I Learned this Weekend

First, Happy Mother's Day to all of the Mothers reading!

Now, onto what I learned this weekend . . .

MS is an extremely complex disease, to learn more about the disease and complexity of the etiology of MS, read this article from the Multiple Sclerosis Association of America (MSAA).  The fact that MS is complex is not news to me, but the article is very informative.

I learned more about stem cell research this weekend, particularly what they are doing at Northwestern University in Chicago.  The clinical trials are currently primarily for those with relapsing-remitting MS (RRMS) (they take a few individuals with Secondary Progressive MS (SPMS), but only if the people are transitioning from RRMS to SPMS.  There is a lot of very interesting information regarding stem cell transplant use in MS patients on the Division of Immunotherapy and Autoimmune Diseases Website.  There is also a series of videos from Professor Richard Burt, who is heading up the clinical trials at Northwestern (you can watch those videos by clicking here).  Lots of interesting and exciting stuff going on there for people who do not respond to the available therapies!

The MSAA has developed a tool for helping people choose the right therapy.  "Designed as a memory aid, the S.E.A.R.C.H. acronym represents the key areas that should be considered when "searching" for the most appropriate MS treatment. Each letter represents an important topic to be addressed by patients, physicians, and other healthcare and social service professionals." S.E.A.R.C.H. stands for:
Health Outcomes

To learn more about S.E.A.R.C.H. and to see a handy chart about the available therapies, go to this website.

Wednesday, May 4, 2011

A Year Older

Yesterday was my birthday, so I am now a year older and definitely wiser.  My husband and I ate dinner at Chili's for my birthday because yesterday, and yesterday only, the local Chili's was donating 10% of your bill to the National MS Society.  We got dessert to go and watched a movie at home.  Overall, a pretty good birthday!

I have been noticing that the L'Hermittes tingling is coming back - for a time I only noticed it when I was exercising or my body temperature was up, but now I am noticing it pretty much every time I lower my head.  I can handle L'Hermittes, so long as the numbness doesn't return.  It has been almost one year since I first started noticing the numbness.  My first MS symptom (optic neuritis) started last April, so it has been over a year since my very first symptom (that I noticed anyway).  This time last year, we were on vacation in Mexico with friends and when we returned, I began to notice numbness in my feet.  I am hoping that history does not repeat itself.  I will keep you updated. 

I received the following information in an email from the Multiple Sclerosis Foundation:

For those living with MS near the University of Illinois:
Increasing Physical Activity in People with MS Using an Internet-Based Program - Investigators at the University of Illinois are examining the influence of an internet-based program for increasing physical activity in people with MS. As a participant you will be randomly assigned to a physical activity program or a control program for 12 weeks. Participants should be between ages 18-64, diagnosed with relapsing-remitting MS, have internet access, be inactive, and be ambulatory with or without assistance.
For more information or to participate, contact Elise McAuley by telephone, 888- 796-7966; or e-mail, inphaims@gmail.com.
For Moms with MS:
Mothers with Multiple Sclerosis - Women with MS who have made childbearing decisions are invited to participate in a study that may help healthcare professionals understand and help with pregnancy decisions. If you are between the ages of 18-45, diagnosed with MS in the past 10 years, have experienced a pregnancy and motherhood since your diagnosis you are invited to participate.
Contact Megan Castano at megan.castano@student.shu.edu, with a mailing address where study material may be sent for your review. Or call Megan Castano, doctoral student, or Dr. Pamela Foley, faculty sponsor, at (973) 275-9450.

Take a survey:
Treatment Preferences Survey for People with Relapsing-Remitting MS -The preference survey will ask subjects to rate desirability of various attributes of MS treatments, such as potential side effects, effectiveness, and administration regimen, and to indicate their preferences among hypothetical MS treatments. The questionnaires should take approximately 30-45 minutes to complete. Subjects will be compensated upon completion of the questionnaires online.
For more information or to participate, please contact Alexis or Tina, toll-free, at 1-866-893-0282, or e-mail Alexis at alexis.french@oxfordoutcomes.com.
Or two:
Participate in an MS Survey Earn $25 Amazon Gift Card People with MS experience a wide array of symptoms that can significantly impact many aspects of their lives. Researchers at the University of Arizona College of Pharmacy (Tucson, AZ) would like to invite any US resident who is 18 years or older who has been diagnosed with MS to voluntarily participate in an online survey asking you about your health. Go to: