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Saturday, December 19, 2009

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The staff of MS Views and News and
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First Infusion Update (Day 2+) by Stuart

In follow-up to what you read yesterday, by 3 in the afternoon, I began losing grogginess and easily by 5pm I was feeling like myself again...

Then,,,,,,, WHAM - at Just past 7:10pm I felt this surge of energy come over me and I felt like I wanted to run a marathon. I had heard whispers of this over the months leading up to this infusion, but thought each person was just imagining-it... but No-o-o,,,,, Now at 10pm I was eager to penetrate the world.. To get back in the saddle (so to speak) and conquer... I was buzzing. Bizzing and Buzzing and tingling from head to toe. Something had to be done. And I knew what next had to be done, if I was to get some sleep.

True to form, that "high" or "rush" soon depleted itself (thanks to one of those pink tablets), allowing me to get a restful night's sleep and then take on the world in the morning.

And so here I am, wide awake and bushy-tailed. Fully alert, with lots of energy...

Again - this was just a follow-up as so many have asked me to keep them informed. How better than posting something here and then this posting will feed (technologically) to facebook, live journal and others..

If you have any questions for me, write to stuartschlossman@bellsouth.net .

written by Stuart Schlossman- RRMS
December 19, 2009

p.s. - register at my website by clicking here, taking less than 30 seconds to register- thanks

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Friday, December 18, 2009

Stuart's First Tysabri Infusion - My MS Blog Posting

Of course there is concern (for me) of The PML, but of even greater concern is the loss of being independent or the need for a walker or wheelchair. This is what finally prompted me to say yes to Tysabri. Then having to convince my wife and informing the rest of my concerned family members.

Yesterday, the day finally arrived for my first infusion and it was a morning filled with worries. My stomach was turmoiled with the butterflies (as we say here in the USA) . was I doing the right thing? Maybe I have been mis-informed all these years. That I really don't have MS, but rather one of those mimicking diseases. What if I was mis-diagnosed? -- A Fantasy...

So many different things were going through my mind yesterday, that it didn't seem like there was enough Alprazolam to help calm me. Yet knew that I needed to drive, so could not over-do, eating these pink tablets.

When I finally arrived for my infusion, my fears had lessened and I began to actually feel calm.

I sat in the chair and would not look as the Rn poked my skin with the little needle or whatever it's actually called. I began to feel dizzy but learned that it was again just my nerves as I peeked and saw that I wasn't yet receiving the IV ... Then when I was finally attached to the IV line, I asked for a blanket that I saw nearby, be layed over my arm so that I did not have to look at this..

BIG Chicken,, YES -- !! The women in the room commented, "just like a man". Cluck-cluck...


After having seen my knee ripped open when I was 15 and having seen a benign tumor removed from the side of my leg when I was in my 20's I had enough of seeing my own,, anything.... Could look at someone else having open heart surgery (as seen on the internet) but nothing more of any medical procedure being performed on myself.. So yes,, Call me a chicken and I will just CLUCK.

Anyway, the hour went by fast as I of course had much to talk about and as long as there are those to listen, I will talk. If not people, animals would suffice... The nurse left the IV line attached for another 20 minutes (give or take) in case I had a side effect.. I felt fine and within an hour of my IV being finished, I was allowed to leave.

I was fine on my ride home, yet a few hours after I got home, I think the adrenaline from the previous 48 hours began to hit and I started feeling dopey. Groggy, dopey, drugged. - Take your pick of applicable wording.

I obviously fell asleep early last night.. Whether from the come-down of the adrenaline rush or the Alprazolam, I was finished for the day. Dang, again, another night that I missed watching programs I wanted to see on TV. I awoke once and felt like I still felt like I had been drugged..

Finally when I knew it was time for me to arise somewhere around 5:30am ( a normal time for me), I went to stand and almost keeled over... Yes, still feeling drugged. Now I wondered if it were the Tysabri ? Nobody mentioned that I might feel like this.

A few hours passed before I got onto the internet and visited my facebook page to ask others. Was told yes, they too felt groggy for a few days after their initial infusions. I called my doctors office about an hour ago and I was told that it's not the Tysabri. To go lay down for a little while. It may be my MS. I am prone to vertigo and imbalance.

Also to be known,I was off my previous medication for just over 5 weeks, maybe something was beginning to flare-up again? After all, we (many) know what happened to me, when I experimentally tried a hiatus a couple of years ago and what happened to me after just over 5 weeks of not using anything... Blah- blah- blah..

Well, I have not yet gone to lay down as I cannot do this in the mornings. Maybe in a little while, just not right now... Ok- So I do feel better that the doctor said it ( the grogginess) was not caused by the Tysabri and so, I am here now, typing this........

Okay so maybe my nerves are still acting-up on me. What to do...?
Hmm - Alaprazolam time, and then get something to eat...

I haven't had that burst of energy yet, that so many claim happen.. Maybe this will come soon...


Hey, thought you might want to see a couple of photos taken at yesterday session. Had someone snap two shots.

No comments please about the mid-line bulge. I do hope to get rid of this over the next few months and in the second photo, you will see the blanket covering my arm, keeping me from being squeamish (Cluck-cluck) .



I wasn't looking. Just pointing




Me and Rn Lisa



This the end of Update number one...


written by Stuart Schlossman - December 18, 2009

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Chronic Illness Survivor Reveals Ways To Beat Holiday Stress

Research supports the idea that having a positive outlook can extend one’s life while stress on the other hand, is linked to six leading causes of death, according to a report issued by the American Psychological Association(APA): heart disease, cancer, lung ailments, accidents, cirrhosis of the liver, and suicide.

Individuals afflicted with chronic illness, and their caregivers are particularly vulnerable to stress especially during the demanding holiday season. The ailing economy and its impact has also become a contributing factor. According to an APA survey, 73% of Americans name money as the number one factor that affects their stress level.

Chris Tatevosian, author of Life Interrupted-It’s Not All About Me,a self-help memoir about living and coping with multiple sclerosis believes it’s vital to organize, orchestrate an delegate during the holidays. “In light of the forthcoming holiday season, the medical world affirms that living with MS or any chronic illness or disability can impact energy levels, and the ability to function is limited. More importantly the amount of energy and quality of functionality changes drastically from moment to moment, especially when we are stressed. Because it is impossible to know how we will be able to function on any given day, planning for holiday events is almost an impossibility. The holidays, sadly but true are extremely stressful for everyone, whether you are healthy, ailing or functioning as the caregiver. Conserving your already compromised supply of energy becomes vital, because exceeding one’s allotted energy does not mean our bodies just slow down. On the contrary, it completely shuts down, and when that happens ,the last place one wants to be is in the presence of a crowd of holiday revelers,” he said.

click here to continue

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About Stuart, the man behind MS Views and News

Many have asked over the last few months and so now, I have updated my profile and hope to soon begin writing my book...

For now though, you can read about me, by clicking here,then scrolling a bit down on the page.

While on the site, click on category topics such as our ms resources and of course, if not yet registered to receive my weekly e-newsletter, click the link to register.



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Pediatric MS: Understanding for Today, HOPE for Tomorrow

MS Learn Online Presents

Today's new Feature Presentation:

This video webcast series explores:

  • Understanding Pediatric
    MS
  • What Can I Do to Help My Child?
  • What Is Being Done

If you have a pop-up blocker, you will need to disable it prior to participating in a MS Learn Online webcast.

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MS Related: Chronic Cerebrospinal Venous Insufficiency (CCSVI)

See the latest research news on CCSVI

Click here to be re-directed to the MSRC-UK website
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Return to this page to leave any comments you have or visit this facebook page to leave a comment on CCSVI.

What do you think? Tell us your thoughts on this potential means for MS

Thursday, December 17, 2009

Breaking News: US MS Society sends out a request internationally for grant applications to pursue the CCSVI lead

Source: National MS Society

Updated December 16, 2009

Summary: Recent reports are calling attention to the idea that a phenomenon called CCSVI, a reported abnormality in blood drainage from the brain and spinal cord, may contribute to nervous system damage in MS. This hypothesis has been put forth by Dr. Paulo Zamboni from the University of Ferrara in Italy. Based on the results of his initial preliminary findings, Dr. Zamboni states that this pilot study warrants a subsequent larger and better controlled study to definitively evaluate the possible impact of CCSVI on the disease process in MS.

It has been proposed by Dr. Zamboni, but not yet proven, that CCSVI may be corrected through endovascular surgery, which involves inserting a tiny balloon or stent into blocked veins in order to permit the flow of blood out of the brain and spinal cord, a procedure that has been called “liberation therapy” in some reports.

The National MS Society is undertaking the funding of new research on CCSVI in MS and has invited investigators worldwide to apply for grants that would explore this lead. These applications will undergo an accelerated review process by an international panel being convened in cooperation with other MS Societies to ensure an expedited, coordinated response. If this hypothesis is confirmed, it may open up new research avenues into the underlying pathology of MS and new treatment approaches to therapy.

Background: In a recent study by Dr. Zamboni and colleagues, the team evaluated abnormalities of blood outflow in major veins draining from the brain and spinal cord to the heart in 65 people with different types of MS, compared with 235 people who were either healthy or who had other neurological disorders. They used sophisticated sonography techniques to detect abnormalities of venous drainage. The investigators reported evidence of slowed and obstructed drainage in the veins draining the brain and spinal cord in many of those with MS. They also found evidence of the opening of “substitute circles” – where the flow is deviated to smaller vessels to bypass obstructions, and these were often found to have reverse flow (reflux) of blood back into the brain.

CLICK here to continue to read from the National MS Society website


This news feed was provided to Stuart Schlossman, directly from the Nat'l MS Society

Wednesday, December 16, 2009

MS Patient Videos Found on the Adult Stem Cell Therapy website

Take a look at Preston Walker's Video, created in September 2009.

See Preston, before and after his stem cell treatment

Hear of his symptoms, including fatigue and depression

Click the above link and take the time to watch and listen

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Learn more of Multiple Sclerosis when registered at: http://www.msviewsandnews.org

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UBC plans to test potentially groundbreaking MS treatment (the Liberation Treatment)

Posted By: Stuart Schlossman -RRMS

New Theory proposes that multiple sclerosis is a vascular disease that can be addressed with surgery

By: Jane Armstrong

Vancouver From Wednesday's Globe and Mail

The University of British Columbia has announced plans to begin patient trials to test a potentially groundbreaking method of diagnosing and treating multiple sclerosis, a disease that afflicts up to 75,000 Canadians.

Researchers have proposed launching a study involving 100 patients to test a theory that MS is a vascular disease that can be treated with surgery. It's the first research proposal in Canada to suggest evaluating the findings of an Italian doctor whose early studies indicate that multiple sclerosis might be caused by vein blockages that lead to a buildup of iron in the brain.

CLICK to read Complete article: The Globe and Mail - British Columbia

Unlike Dr. Zamboni's earlier studies, the UBC research plan will include a control group – which gives more heft to a study's findings – and will take place over a longer period.


Please return to this blog posting to leave comments


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Interesting case study featuring prolactin as a trigger of MS

Written by Hollie - from the Accelerated Cure Project

If you, like me, watch the TV show "House," you'll be familiar with the concept that tumors in the body can over-secrete all kinds of substances which can cause baffling symptoms (baffling to the doctors on "House," anyway!). Here's a very interesting case study of that exact phenomenon in a man diagnosed with MS. (This link should lead to an open-access copy if you'd like to read the article for yourself.)

As the case study describes, the man went to the doctor at age 32 with symptoms of optic neuritis and leg weakness. MRI imaging revealed demyelinating lesions as well as a tumor on his pituitary gland (an adenoma) that was secreting excess prolactin. Prolactin is a hormone that stimulates the production of breast milk, but it can also have strong effects on the immune system (both stimulatory and inhibitory effects depending on other factors). CSF testing also revealed the presence of oligoclonal bands, a strong diagnostic marker of MS. The man's tumor was removed and he remained MS symptom-free and prolactin-normal for the next 12 years. Then the tumor came back, his prolactin levels rose, and he simultaneously developed new MS symptoms and MRI lesions. The man is now being treated with a prolactin-lowering drug, and has been in remission apart from one breakthrough episode of high prolactin levels and new MS lesions.

Although suppressing prolactin in this man correlated with suppression of his MS activity as well, it's hard to generalize this example to others with MS. Interestingly, prolactin levels in pregnant women reach levels that are many times higher than reported in this case study, and pregnancy and breastfeeding are both associated with lower relapse rates in women with MS. Furthermore, case-control studies have not found significantly higher levels of prolactin in people with MS. Still, unusual cases like this can sometimes be very informative -- so understanding why prolactin seems to be such a strong MS trigger in this man could lead to new insights about MS.

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I, Stuart Schlossman, would like to thank The Accelerated Cure Project for all they have done over the years.
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Tuesday, December 15, 2009

Italian MS research (on CCSVI) brings hopeful patients to private Vancouver clinic

Surgical centre will do tests for $2,300 to determine if they’re candidates for treatment

BY PAMELA FAYERMAN, VANCOUVER SUN
DECEMBER 14, 2009

VANCOUVER - A private clinic in Vancouver is being deluged by multiple sclerosis patients from across Canada and the U.S. who have heard about an Italian study that may revolutionize the way the disease is treated or possibly even cured.

The False Creek Surgical Centre has nothing to do with the Italian research, but co-owner Dr. Mark Godley said that for $2,300, it is offering patients an MRI and ultrasound that may indicate whether they’re candidates for the type of treatment described in the Italian study.

Such testing is not available in the public health sector. While the False Creek clinic does the imaging, it does not do the surgical intervention.

The recently published study shows that multiple sclerosis (MS) may actually be a vascular disease triggered by disruptions in blood circulation.

Its theory is that MS is caused by venous abnormalities at the base of the brain and that a “liberation procedure” (balloon venoplasty done on veins, like angioplasty done on arteries) could treat or even possibly cure patients.

Before such procedures, imaging tests looking for narrowing or blockages of veins (stenosis) must be done, since lead researcher Dr. Paolo Zamboni maintains such abnormalities are almost always associated with MS.

Read More and see images, by clicking here


Lucky to live near Vancouver. Geez - I think I might want to fly to Vancouver in 2010. - Stuart
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Amazing Stem Cell Therapy news for people with Multiple Sclerosis

I first wrote a blog post of this story yesterday.

Below is another posting (even better than yesterday's post):

Multiple Sclerosis Treatment with Adult Stem Cells

by David Prentice
December 14, 2009

The latest success story comes from Australia. Ben Leahy, 20, was in a wheelchair and experiencing vision problems when he was treated earlier in 2009. Ben is now walking after treatment with adult stem cells. The treatment involves isolating the patient’s bone marrow adult stem cells, giving the patient mild chemotherapy to destroy the rogue immune cells that are attacking the nervous system, then re-injecting the patient’s adult stem cells.

While the Australian group has not yet published their results, the technique mirrors the treatment results published in 2009 in Lancet Neurology by Dr. Richard Burt’s team at Northwestern, where they reported that they had reversed the neurological dysfunction of early-stage multiple sclerosis patients.

As Dr. Burt noted:

“This is the first time we have turned the tide on this disease.”

CLICK HERE to continue reading and to watch MS Patient videos of this treatment

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Keep up-to-date with MS related News (as seen above), when registered with us. Visit our website to register NOW. It will not take more than 30 seconds to register and once accomplished, you will then receive our weekly MS related e-Newsletter, which is currently being received in 58 countries by more than 6000 e-recipients. Click HERE to register. - Thank You

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Monday, December 14, 2009

A Multiple Sclerosis MD, discusses CIS, Secondary Progressive MS, Emerging Therapy Trials

FYI - Howard Zwibel was Stuart's Neurologist from 1999 to the end of 2008
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Masters of MS Alert
New Multiple Sclerosis Expert
www.mastersofms.com

Topics: Discussing CIS, Secondary Progressive MS, Emerging Therapy Trials

Master: Howard L. Zwibel, MD
December 2009
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you for signing up to receive the monthly update for the Masters of MS website.

This month’s expert is Howard L. Zwibel, MD, Medical Director, Multiple Sclerosis Center at Doctors Hospital, Coral Gables, Florida on the topics: Discussing CIS, Secondary Progressive MS, Emerging Therapy Trials

Try it now by clicking here www.mastersofms.com.


Please feel free to visit our archives and also post a question on the site, your identity remains anonymous. You may submit questions and comments about this program to: info@mastersofms.com or use the Ask a Question link on the site.

Please feel free to contact us directly. We can be reached at:

Masters of MS, 66 South Maple Avenue, 3rd Floor, Ridgewood, NJ 07450
e-mail to: info@mastersofms.com

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Man walks again after Multiple Sclerois stem cell treatment

Updated December 14, 2009

An Australian man appears to have made a remarkable recovery from multiple sclerosis after receiving new stem cell treatment.

Ben Leahy, 20, was diagnosed with the disease in 2008 and ended up in intensive care at one point with respiratory failure after his condition deteriorated rapidly.

He was in a wheelchair and also had sight problems when he underwent the procedure earlier this year but today he is walking and recovering well.

Australian doctors removed stem cells from Ben's bone marrow, then used chemicals to destroy all the existing immune cells in the body before re-injecting his stem cells.

ACT neurologist Dr Colin Andrews says the positive results in Ben have surprised doctors.

"At the moment there's a good chance we may have arrested the disease," he said.




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Updated information on: Chronic Cerebrospinal Venous Insufficiency (CCSVI) for Multiple Sclerosis

What is Chronic cerebrospinal venous insufficiency (CCSVI)?

CCSVI

Chronic cerebrospinal venous insufficiency is described as a chronic problem (ongoing) where blood from the brain and spine has trouble getting back to the heart.

It is caused by a narrowing in the veins (stenosis) that drain the brain and the spine. Blood takes longer to return to the heart, and it can reflux back into the brain and spine or cause oedema and leakage of red blood cells and fluids into the tissues of the brain and spine.

Blood that remains in the brain too long creates a delay in deoxyginated blood leaving the head ("slowed perfusion"). This can cause hypoxia, a lack of oxygen in the brain. Plasma and iron from blood deposited in the brain tissue can also be very damaging leading to iron along with other unwelcome cells, to cross the crucial brain-blood barrier.

Continue to read this and other articles and video reports on CCSVI by clicking here

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Want to remain up to date on this topic and others concerning Multiple Sclerosis? Then it is highly recommended for you to be registered at: www.msviewsandnews.org so that you can receive their weekly e-newsletter. You can also keep up to date with information found on this facebook page, where blog posts are automatically feed-to.
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Could Novartis be first to launch Multiple Sclerosis oral therapy?

Article source: MSRC-UK

FTY720 (Fingolimod) is the first in a new class of disease-modifying treatments called sphingosine 1-phosphate receptor (S1P-R) modulators and has a novel mode of action different from all currently marketed MS therapies.
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Novartis AG is jockeying with German drug maker Merck KgaA to deliver the first disease modifying treatment for relapsing forms of multiple sclerosis that can be taken orally, rather than by infusion or injection.

Fingolimod could finally move ahead in the race to market, as the FDA rejected Merck's new drug application for its Cladribine tablet.

On November 30, US regulators issued a "refusal to file letter" to Merck Serono, the US subsidiary. Company spokesman Gangolf Schrimpf told me the FDA preliminary action of the cladribine submission was not an assessment of the efficacy and safety of the compound. Nonetheless, the agency obviously felt the deficiencies in the filing were material enough - scientific or legal - to delay its formal review of the tablet.

Initial results from Novartis' two-year FREEDOMS FTY-720 study show that once-daily oral fingolimod reduced the relapse rate by 54 percent for the 0.5 mg dose in patients with relapsed MS. Novartis looks to file its new drug application with the FDA within next few months, followed fast track approval and launch in summer 2010.

Continue to read , direct from the MSRC-UK website

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Sunday, December 13, 2009

Man in wheelchair counsels others to overcome handicaps

BY JILL WHALEN (STAFF WRITER)
Published: December 13, 2009


In the span of just a few years, Brian Lang went from walking on his own to needing a cane, a quad cane and then a walker.

He's now in a wheelchair.

Although multiple sclerosis robbed him of the use of his legs, it's not stopping him from helping others. The Hazleton man meets with others who are disabled in hopes that they'll find a level of independence they're comfortable with.

"I know what (disabled) people are going through," said Lang, of Hazleton.

As a peer mentor for the Anthracite Region Center for Independent Living, Hazleton, he visits handicapped individuals who are in nursing homes to let them know they can be mostly self-sufficient in their own home or apartment.

"It's very rewarding work," he noted.

Lang has been in a wheelchair since 2005, a few years after doctors diagnosed him with multiple sclerosis. He was also diagnosed with Lyme Disease that year, a disease that's spread through bites from deer ticks.

Continue to read



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New Mobility Magazine asks: If you have ever been denied Complex Rehab Equipment

Have you or a loved one been denied Complex Rehab Equipment that would enable a healthier, happier and higher quality of life?

Did you know your government is providing reimbursement based on which equipment they think is best for you? Their decisions are not based on what actually is best for your unique medical needs.

So basically — you are getting rehab equipment — but what the government feels is appropriate for you. Not what is really best for you to live an independent healthy lifestyle.

If this scenario sounds familiar and you would like to get involved and help change the way the government reimburses for Complex Rehab Equipment, click here and apply for a Consumer Scholarship to the CELA conference in April 2010.

This is an expenses paid trip to Washington, DC where you can tell your story in person to members of Congress on Capitol Hill. Your involvement will help change the government’s perspective for you and others with disabilities.

To apply for your CELA expense paid scholarship to Washington, DC click here.

To learn more about CELA 2010 click here.

New Mobility writes: Thank you and we look forward to hearing from you.

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Walgreens Specialty Pharmacy to participate in MS study

By Allison Cerra

DEERFIELD, Ill. (Dec. 10) Walgreens Specialty Pharmacy, a subsidiary of Walgreens, was chosen to participate in the "Therapy Optimization in Multiple Sclerosis" study, a two-year medical research study sponsored by Teva Neuroscience.

The goal of the study is to demonstrate how a specialty pharmacy-based therapy management program affects adherence, persistency and patient outcomes. Targeted patient outcomes will include relapses, disability progression, quality of life and the ability to perform work and daily activities. Approximately 3,000 patients from Walgreens and other participating specialty pharmacies will be recruited for the study.

“We are honored to participate in the TOP MS Study,” said Ray Tancredi, senior director of trade account management for Walgreens Specialty Pharmacy. “We support efforts to measure outcomes that lead to more effective MS care. Walgreens is committed to this study and to the many patients who rely on us to provide timely medication fulfillment and clinical assistance.”

Walgreens Specialty Pharmacy’s Care team of pharmacists, nurses and care coordinators provides MS patients with personalized support and education to help them get the best results from their therapy. This extensive network of specially trained clinicians helps patients face the many challenges, including side effects, that can make it difficult to stay on track with their medications. Walgreens therapy-specific clinical management programs are designed with those challenges in mind.

"Teva Neuroscience has initiated the TOP MS Study in order to enhance our understanding of issues facing MS patients, which further demonstrates our commitment to the MS community," said MerriKay Oleen-Burkey, project leader, TOP MS Study, Teva Neuroscience. "Walgreens has been selected to partner with Teva Neuroscience on this study, due to its outstanding commitment to MS therapy management."

People interested in participating in the study can contact Christina Makowski, Walgreens study manager, at 412-250-4703 or Christina.Makowski@Walgreens.com. - Article source: Drugstore News

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'My son had multiple sclerosis aged five'

I initially posted this story in Mid November, found here:


Now, it's in BBC Headlines:

By Jane Elliott
Health reporter, BBC News

Sam Blyth
Sam suffered terrible headaches

When Sam Blyth lost his eyesight his mother felt her worst fears were confirmed.

For weeks she had been going backwards and forwards to the GP saying he was ill.

Sam complained almost constantly that his head hurt, but Sandra said no-one seemed to think he was as ill as she feared and put his increasingly distressing symptoms down to a heavy cold.

"He had a cold but as soon as that went he started complaining of headaches and was always pointing to the same place," she said.

Painful headaches

"Being a mum I knew straight away there was something wrong.

"He had never complained of a headache before and they just seemed so severe.


CONTINUE From here

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