New Resource for MS: “MS Active Source”

Editor’s Note:  MS is thought to be more prevalent in Gulf War veterans than other people.  Despite repeated calls for such research, VA officials have yet to conduct any studies on the prevalence of MS in Gulf War veterans.

MS ActiveSource provides many excellent tools for managing MS. 

Additionally, the tools may be of interest and value to other Gulf War veterans and those who care for them.

--Anthony Hardie

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MS ActiveSource is a place that offers information to support people living with multiple sclerosis.

Information on MS ActiveSource is updated to provide new ideas for living well and staying active. In short, it is a tool to help you take control of your MS. Here you can use any of your MS ActiveSource tools to build a personalized homepage or connect with a mentor or support.

Whether you are here to seek knowledge or support, MS ActiveSource can be a destination for many of your questions about living well with MS.

 

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  Exercising your mind is just as important as exercising your body.

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  Being organized may make the daily management of your multiple sclerosis easier.

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  My MS Yoga was designed to help you stay active.

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  Keep track of your active life.

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  Discover local and national MS-related programs.

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  Find someone who may understand, request an MS mentor.

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Welcome to a place that’s completely devoted to helping you try to live better with your MS. Here you’ll find more ways to stay active, eat healthier, connect with others, and feel better about MS. Have a look.

Register today with MS Active Source and:

• Receive a free fitness DVD
• Share your favorite recipe
• Find memory games and fitness tools
• Speak with a mentor

Register

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Source:  MS ActiveSource, http://www.msactivesource.com/

Neurology Now: FDA Approved First Oral MS Therapy

MS is thought to be more prevalent in Gulf War veterans

Written By Kierstin Wesolowski, Neurology Now

(NeurologyNow) - On Sept. 22, 2010 the FDA approved fingolimod, the first multiple sclerosis (MS) oral therapy, for use in patients with relapsing forms of MS. 

Fingolimod binds to the sphingosine 1-phosphate receptor-1 (SIPI) on some lymphocytes, trapping them in the lymph nodes. It produces a reduction in the number of active T-cells circulating to the CNS, which decreases neuroinflammation and also CNS damage.

“The approval will have a tremendous impact on MS treatment because it offers a new mechanistic approach to the treatment of the disease,” said Bruce A. Cohen, MD, professor of neurology and Director of the MS program at the Feinberg School of Medicine at Northwestern University.

“It also provides an acceptable form of treatment for patients who are unwilling to take current therapeutics or have failed other therapies. Many people have injection phobias and this treatment offers an alternative.”

The MS world has long anticipated fingolimod’s approval, added John Corboy, MD, professor of neurology at the University of Colorado-Denver and co-director of the Rocky Mountain MS Center at Anschutz Medical Campus. “Once we saw the clinical trial data and the FDA review committee’s unanimous recommendation of its approval [in June], it was essentially considered a fait accompli [a fact]that it would be approved.”

The FDA approved the 0.5mg dose of fingolimod based on the results of two phase 3 clinical trials: TRANSFORMS (Trial Assessing Injectable Interferon versus FTY720 Oral in Relapsing-Remitting Multiple Sclerosis) and FREEDOMS (FTY720 Oral in Relapsing-Remitting Multiple Sclerosis).

TRANSFORMS investigators randomized 1,292 patients to 0.5mg or 1.25 mg of fingolimod daily, or interferon beta 1A. Researchers found an annualized relapse rate of 0.16 in the 0.5mg group and 0.20 in the 1.25mg cohort (52- and 38-percent relapse reduction rates, respectively).

In FREEDOMS, investigators randomized 1,033 patients to 0.5mg or 1.25mg of fingolimod or placebo. An annualized relapse rate of 0.18 was reported in patients taking 0.5mg of fingolimod compared to 0.16 in patients taking 1.25mg (54- and 60-percent relapse reduction rates, respectively).

(Read the Feb. 18, 2009 Neurology Today story, “Two Oral Therapies Found Effective for MS” in print and online http://bit.ly/aqdmCy)

The FDA advised that patients using fingolimod be monitored for bradycardia during the first six hours of being given the drug, according to an FDA news release. In addition, patients should receive an ophthalmologic evaluation prior to starting treatment due to the risk of developing macular edema, which occurred in some patients. (See “Possible Adverse Events”)

EXPERTS COMMENT
“We haven’t seen any specifics from the FDA or [fingolimod manufacturer, Novartis] on how to do the monitoring,” said Dr. Corboy. “Can the patient be left alone in the office for six hours, or do they need to be hooked up to telemetry, where they’re having a continuous EKG? And does an EKG need to be done on all patients, or only those with a history of heart disease?”

He added that most of these decisions will most likely have to be made according to individualized practices.   

Aaron E. Miller, MD, chief medical officer of the National MS Society and director of the MS Center at Mt. Sinai Medical Center in New York City, said he will prescribe fingolimod conservatively as more safety data are gathered during the post-marketing period. However, “if the safety profile looks good, then almost any patient with the relapsing form of MS would be a good candidate” for its use. Even patients who are doing well on their injectable forms of disease-modifying therapy, he added. 

Dr. Cohen advised that neurologists will have to be cognizant of possible later emerging side effects that weren’t identified in the clinical trials and may come to light with more widespread use of the agent. 

All the experts who spoke to Neurology Now were encouraged by fingolimod’s approval and its subsequent impact on MS treatment.

“The treatments that we presently have aren’t as good as we would like them to be: they aren’t cures, and they’re not tolerated or adequate enough for a variety of patients,” said Dr. Corboy. “I’m happy to have another treatment option available and look forward to learning more about it as it goes into general use. I anticipate it will have a significant role in the armamentarium in treating MS patients.”

POSSIBLE ADVERSE EVENTS
The following are possible adverse events associated with fingolimod. Dr. Corboy noted that the majority of these side effects were more significant at the higher, 1.25mg dosage, which was not approved by the FDA.

• Bradycardia
• Heart Block
• Increased blood pressure
• Macular edema
• Restrictive lung disease
• Liver function abnormalities
• Headache
• Influenza and other infections

REFERENCES

• Kappos L, Radue EW, Burtin P, et al. A placebo-controlled trial of oral fingolimod in relapsing multiple sclerosis. N Engl J Med 2010; E-pub 2010 20 Jan.
• Cohen JA, Barkhof F, Kappos L, et al. Oral fingolimod or intramuscular interferon for relapsing multiple sclerosis. N Engl J Med 2010; E-pub 2010 20 Jan.

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Source:  Neurology Now, http://journals.lww.com/neurologynow/blog/breakingnews/pages/post.aspx?PostID=16

Gulf War Illness, other CDMRP Programs to Remain Fully Funded this Year under Congressional Funding Bill

House Continuing Resolution contains full funding for Gulf War Illness treatment research, funding for ALS, MS, Lung Cancer, and 21 other key military medical research priorities

Written by Anthony Hardie, 91outcomes.com

(91outcomes.com) – The continuing appropriations (CR) legislation expected to be considered in the U.S. House of Representatives this week contains full funding for the Congressionally Directed, treatment-focused Gulf War Illness Medical Research Program (CDMRP), a move that will be of great relief to the Gulf War veteran community. 

Since the failure of the omnibus appropriations bill at the end of the 112th Congress last December, the Gulf War Illness advocacy community has remained vigilant as current year funding was left as an unwritten promise by Congressional leaders.

As it was funded in the past few years, the Gulf War Illness peer-reviewed treatment-focused research program on which I have served since its initial funding in 2006 would be funded under the House bill at $8 million.  Our program vision statement directs that funded research must help to improve the health and lives of those suffering from Gulf War Illness. 

Led by Chairman Jim Binns, the Congressionally chartered Research Advisory Committee on Gulf War Veterans’ Illnesses (RAC-GWVI) on which I serve recommended, sought creation of, and has been instrumental in the funding for the CDMRP program for peer-reviewed Gulf War Illness treatment research.

The House CR would also provide an $8 million appropriation for ALS research funding, a substantial increase over last year.  ALS has been found in epidemic-level rates in veterans of the 1991 Gulf War and is a presumptive condition for service-connection for any U.S. veteran.

ALS, also known as Lou Gehrig’s disease, is a rapidly degenerative neurological condition that usually claims the lives of its victims in as short as 18 months after initial diagnosis.  Heavily engaged in advocacy efforts, the ALS Association’s mission is is to lead the fight to treat and cure ALS through global research and nationwide advocacy while also empowering people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support.

Multiple Sclerosis (MS) funding is also included in the House version of the CR, at $4.8 million.  MS is believed by Gulf War veterans to also be highly prevalent among veterans of the 1991 Gulf War.   The National MS Society, heavily involved in advocating for this funding, is a collective of passionate individuals who want to do something about MS now—to move together toward a world free of multiple sclerosis.

MS is a presumptive condition for VA service-connection if it’s diagnosed within seven years of discharge from active duty. 

Under the House version of the CR, peer-reviewed Lung Cancer research would be funded at $12.8 million.  The Lung Cancer Alliance, the only national non-profit organization dedicated solely to patient support and advocacy for people living with lung cancer and those at risk for the disease, has substantial concerns about lung cancer in Gulf War and other veterans.

Led by House Rules Committee Chairman David Drier, new to the current 113th Congress is a House Rules website that allows for relatively transparent and easy tracking of upcoming legislation and bills currently under consideration by the House.    Internet resources for tracking are posted below this article.

Twenty-one other CDMRP peer-reviewed military medical research programs would also be funded under House CR.   The full listing of the critically important CDMRP military medical research programs and their proposed funding levels under the House CR are as follows:

1. ALS $8,000
2. Armed Forces Institute of Regenerative Medicine $4,800
3. Autism Research $6,400
4. Bone Marrow Failure Disease Research Program $4,000
5. Duchenne Muscular Dystrophy $4,000
6. Global HIV/AIDS Prevention $10,000
7. Traumatic Brain Injury and Psychological Health $100,000
8. Global Deployment of the Force medical research funding -Department of Defense requested transfer to maintain full funding for the program $125,000
9. Gulf War Illness Peer-Reviewed Research Program $8,000
10. Multiple Sclerosis $4,800
11. Peer-Reviewed Alzheimer Research $15,000
12. Peer-Reviewed Breast Cancer Research Program $150,000
13. Peer-Reviewed Cancer Research Program $16,000
14. Peer-Reviewed Lung Cancer Research Program $12,800
15. Peer-Reviewed Orthopedic Research Program $24,000
16. Peer-Reviewed Ovarian Cancer Research Program $20,000
17. Peer Reviewed Vision research in conjunction with the DoD Vision Center of Excellence $4,000
18. Peer-Reviewed Prostate Cancer Research Program $80,000
19. Peer-Reviewed Spinal Cord Research Program $12,000
20. Research in Alcohol and Substance Use Disorders $5,200
21. SBIR to the core funded RDT&E $1,200
22. Tuberous Sclerosis Complex (TSC) $6,400
23. Pain Management Task Force Research $4,000
24. Peer Reviewed Medical Research Program $50,000
25. Neurofibromatosis Research $16,000

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MORE INFORMATION:

H.R. 1, Full Year Continuing Appropriations Act, 2011:  http://rules.house.gov/Legislation/legislationDetails.aspx?NewsID=100 

CR DoD Funding Tables:  See Page 54 of 55 --  http://www.rules.house.gov/Media/file/PDF_112_1/legislativetext/2011crapprops/FY%202011%20Department%20of%20Defense%20Base%20Funding.pdf

All About MS – a reportedly common diagnosis among some Gulf War veterans

IMAGE:  Multiple sclerosis is a central nervous system disorder marked by decreased nerve function with initial inflammation of the protective myelin nerve covering and eventual scarring. Symptoms and severity of symptoms vary widely and may progress into episodes of crisis alternating with episodes of remission.

(MultipleSclerosisCentral.com) - MS; Demyelinating disease

Symptoms

Symptoms vary, because the location and severity of each attack can be different. Episodes can last for days, weeks, or months. These episodes alternate with periods of reduced or no symptoms (remissions).

Fever, hot baths, sun exposure, and stress can trigger or worsen attacks.

It is common for the disease to return (relapse). However, the disease may continue to get worse without periods of remission.

Because nerves in any part of the brain or spinal cord may be damaged, patients with multiple sclerosis can have symptoms in many parts of the body.

Muscle symptoms:

• Loss of balance
• Muscle spasms
• Numbness or abnormal sensation in any area
• Problems moving arms or legs
• Problems walking
• Problems with coordination and making small movements
• Tremor in one or more arms or legs
• Weakness in one or more arms or legs

Bowel and bladder symptoms:

• Constipation and stool leakage
• Difficulty beginning to urinate
• Frequent need to urinate
• Strong urge to urinate
• Urine leakage (incontinence)

Eye symptoms:

• Double vision
• Eye discomfort
• Uncontrollable rapid eye movements
• Vision loss (usually affects one eye at a time)

Numbness, tingling, or pain

• Facial pain
• Painful muscle spasms
• Tingling, crawling, or burning feeling in the arms and legs

Other brain and nerve symptoms:

• Decreased attention span, poor judgment, and memory loss
• Difficulty reasoning and solving problems
• Depression or feelings of sadness
• Dizziness and balance problems
• Hearing loss

Sexual symptoms:

• Problems with erections
• Problems with vaginal lubrication

Speech and swallowing symptoms:

• Slurred or difficult-to-understand speech
• Trouble chewing and swallowing

Fatigue is a common and bothersome symptoms as MS progresses. It is often worse in the late afternoon.

Signs and tests

Symptoms of MS may mimic those of many other nervous system disorders. The disease is diagnosed by ruling out other conditions.

People who have a form of MS called relapsing-remitting may have a history of at least two attacks, separated by a period of reduced or no symptoms.

 

Myelin and nerve structure

IMAGE:  Myelin is the layer that forms around nerves.

The health care provider may suspect MS if there are decreases in the function of two different parts of the central nervous system (such as abnormal reflexes) at two different times.

A neurological exam may show reduced nerve function in one area of the body, or spread over many parts of the body. This may include:

• Abnormal nerve reflexes
• Decreased ability to move a part of the body
• Decreased or abnormal sensation
• Other loss of nervous system functions

An eye examination may show:

• Abnormal pupil responses
• Changes in the visual fields or eye movements
• Decreased visual acuity
• Problems with the inside parts of the eye
• Rapid eye movements triggered when the eye moves

Tests to diagnose multiple sclerosis include:

• Lumbar puncture (spinal tap) for cerebrospinal fluid tests, including CSF oligoclonal banding
• MRI scan of the brain and MRI scan of the spine are important to help diagnose and follow MS
• Nerve function study (evoked potential test)

MS Foundation: Biomarkers Test for MS Nine Years Before Symptoms Appear

(MSfocus.org) - A small study analyzing  the blood of healthy people who developed MS, along with  the blood of those who did not, has uncovered “blood signatures” that may lead to a diagnosis of MS before symptoms appear, and consequently earlier and more effective intervention.

"We are not yet able to treat people with MS to prevent the onset of the disease but knowledge is power," says Anat Achiron, a professor of Tel Aviv University's Sackler Faculty of Medicine and vice-dean of research at Sheba Medical Center. "Every time we meet a new patient exhibiting symptoms of MS, we must ask ourselves how long this has been going on. We can diagnose MS by brain MRI, but we've never been able to know how 'fresh' the disease is."

If doctors can predict the onset of MS early enough, intervention therapies using immunomodulatory drugs or beta-interferon drugs that stave off MS symptoms might be used.

Examining blood samples of twenty19-year-old Israelis who were inducted into the army as healthy soldiers, and the nine of them who later developed MS,  Achiron and her team at Sheba were able to use a "high throughput analysis" using more than 12,000 gene transcripts expressions. The screening compared similarities and differences in the blood of those who developed MS and those who did not, eventually establishing biological markers.

"Those who will develop MS will show a different blood signature from those who will not," says Achiron. "When we compared the gene expression signatures, we saw a similar pattern of the same working biological processes."

These early genetic markers may now be used to test for MS up to nine years before healthy young adults start developing symptoms. And because MS is thought to have a genetic component and a tendency to be found in siblings, Achiron says the biomarkers can be used as a tool for brothers and sisters of people with MS. The goal is to learn more about the genetics of MS through this new discovery, with the hope that early intervention therapies may be more effective, and help advance medicine toward a cure, according to Achiron.

Typically by the time a person notices symptoms, significant and irreversible nerve damage is already done.

LANSING ARTICLE: Family battles VA to get aid for ailing Gulf War vet

Written by John Schneider • Lansing State Journal • July 8, 2009

(Lansing, Mich.) The war chemicals and vaccinations Stephanie Harrist endured in Desert Storm, during the first Gulf War, may or may not have caused, or contributed to, her multiple sclerosis.

Harrist's stepmother, Karen Dunckel of Lansing, said Harrist's doctors have suggested a link. It's unlikely, it will ever be proven, one way or the other, she said.

But there is no disputing the fact that Harrist, a 39-year-old veteran of the U.S. Army, served her country for 10 years. For that alone, her family members argue, she deserves better treatment than she's getting from the U.S. Department of Veterans Affairs.

"It's very frustrating," Dunckel said. "These are the people who fight for our freedom. You hear about them being ignored (by the VA) when they come home. I'm living it."

In a nursing home

Harrist's disease has progressed to the point where she can't walk, feed herself or speak. Since December, she's been in a nursing home in Lowell, east of Grand Rapids.

Harrist's birth mother, Bath resident Brenda Bartkowiak, recently left me a voice-mail message pleading for intervention on behalf of her daughter.

The issue: a wheelchair.

Harrist has one, but it's useless to her because it doesn't provide the support she needs to remain upright in the chair.

"She slides off to the side and bumps her head," Bartkowiak said. "She can't hold her body up."

Approved - in theory

On April 15, after the standard period of bureaucratic delay, the VA authorized a customized rebuilding of the chair to suit Harrist's needs.

But that's where it ended - with an authorization and a promise.

Bartkowiak and Dunckel tell me they they've had dozens of conversations with the folks at the Battle Creek VA Medical Center. They hear about parts on order. They hear about somebody vital to the process being on vacation, or out sick or "dropping the ball."

"I think one department crosses the T's and another department dots the I's and they just can't get together," Bartkowiak said.

Meanwhile, Harrist is pretty much confined to a stationary reclining chair in her room at the nursing home.

My calls to the Battle Creek VA eventually led me to Public Affairs Officer Todd Greenman, who said privacy rules prevented him from discussing the particulars of Harrist's case. However, Greenman added: "We are looking into it. It will receive the appropriate attention."

Bartkowiak and Dunckel said they've heard that before - many times. But nothing ever happens.

"I'm afraid they're just waiting for her to die," Bartkowiak said.

Call John Schneider at 377-1175, send a fax to 377-1298 or e-mail jschneid@lsj.com.