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Disclaimer: 'MS Views and News' DOES NOT endorse any products or services found on this blog. It is up to you to seek advice from your healthcare provider. The intent of this blog is to provide information on various medical conditions, medications, treatments, and procedures for your personal knowledge and to keep you informed of current health-related issues. It is not intended to be complete or exhaustive, nor is it a substitute for the advice of your physician. Should you or your family members have any specific medical problem, seek medical care promptly.

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Saturday, March 13, 2010

BOTOX(R) (OnabotulinumtoxinA) Receives FDA Approval for Treatment of Upper Limb Spasticity in Adults

IRVINE, Calif., Mar 09, 2010 (BUSINESS WIRE) -- Allergan, Inc. (NYSE: AGN) today announced that the United States Food and Drug Administration (FDA) has approved BOTOX(R) (onabotulinumtoxinA) for the treatment of increased muscle stiffness in the elbow, wrist and fingers in adults with upper limb spasticity.

Spasticity is a debilitating condition impacting approximately 1 million Americans1, many of whom suffer from spasticity in the upper limbs following a stroke. Upper limb spasticity may also occur following a spinal cord or traumatic brain injury or in patients affected by multiple sclerosis or adults with a history of cerebral palsy.

Although not a life-threatening condition, upper limb spasticity can be severely debilitating and painful, producing disfiguring muscle contractions that can result in stiff, tight muscles in the elbow, wrist and fingers, or a clenched fist. This stiffness hinders a patient's ability to perform simple tasks, such as dressing or washing the hand, and often leaves the patient dependent on a caregiver to help with simple activities.

Click here to continue reading from the 4th paragraph

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Friday, March 12, 2010

The Tysabri® "RESTORE" Study -- an Interruption study of medication usage

FOR THOSE in FLORIDA, this study is taking place at Neurological Associates Research. - See information found below on How to contact this research center if interested in the study:

"Restore" Clinical Research Study - Criteria and study information found below

This is an Institutional Review Board (IRB) approved, (1) year study - Looking at a potential (6) months interruption of Tysabri


Criteria that you must meet:
  • You must Currently be on Tysabri
  • You must have been on Tysabri for at least 12 consecutive months
  • You must be between 18 and 60 years of age
  • You must be clinically stable (no relapses) for the past 12 months
  • You must not be pregnant, nursing, or planning on becoming pregnant in the next year

This study is expecting to enroll 200 people.

There are 2 parts to the study.

The first 6 months, people are randomly divided into 3 groups:

Group 1 (50 people) continue on Tysabri

Group 2 (50 people) go on placebo

Group 3 (100 people) go on either Avonex, Copaxone, or Solumedrol. If you are in this group, you may choose which of those 3 you will go on.

After the first 6 months, everyone goes back on Tysabri for the remaining 6 months.

If someone has a relapse in the first 6 months, they have the option of going directly back on Tysabri for 6 more months.

There are 11 visits. The first 6 months the visits are monthly. The second 6 months the visits are every 3 months. MRIs and lab work are done at every visit.


Patients will receive ALL study medication (regardless of which group you are in), MRIs, lab work, exams and study-related assessments at no charge for (1) year.


FOR THOSE in FLORIDA, contact : Neurological Associates Research if interested in being a study patient
572 East McNab Road - Suite 202 - Pompano Beach, Fl. 33060 - Brian Steingo, MD - Call : Cara at (954) 738-1686


IN Stuart's own words, "I believe the purpose of this study is to see if stopping the use of Tysabri an d then the re-start is to determine if for example - if a patient has had 24 infusions and then is taken off Tysabri for 6 months, when they re-begin using Tysabri, are they re-beginning with infusion #25 or is their system re-booted causing them to now begin again with infusion #1.
A study much needed for determining long term usage of the medication".


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Sub Q - Tysabri Injection Study - for People With MS

The information found here was obtained from Erin T.

A study to evaluate delivery of Natalizumab (Tysabri®)

Study Rationale: While other Multiple Sclerosis medications can be administered at home, Natalizumab is given through IV at infusion centers. This can be costly and inconvenient to patients, especially if there is not an infusion center nearby.

Study Objective: The objective of the study is to determine if Natalizumab can be given by subcutaneous (SC) injection (under the skin). This will be accomplished through laboratory blood work, clinical assessments, and MRI scans.

Study Description: The study is sponsored by Biogen Idec. Neurologist Dr. Ronald Murray will oversee all study activities at IMMUNOe Health Centers.


New participants will be assigned to either Group D or Group E (in white):
(Click this link to continue):


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If you know anybody with, or affected by Multiple Sclerosis (MS), please ask them to register at my website: http://www.msviewsandnews.org- Once registered, the person will then receive our weekly MS related e-newsletter and have access to thousands of MS related articles. Also, please view our MS Blog (http://wwwmsviewsandrelatednews.blogspot.com/).
Help me to empower those affected by MS. After all, "Knowledge is Power".

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Narrow Veins and MS - The CCSVI Theory, Caution, and Public Outcry for more research

Jason K offered this link: http://wcbstv.com/video/?id=139889@wcbs.dayport.com - which provides more information on the pros the cons and more...

Yes, CCSVI could be a new beginning to the final chapter. However much more research is needed as you
will hear in the medical update found in the above link.

Thank you Jason, for keeping us informed........


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Stem cell shot helps stroke patients recover: Study

NOT directly pertaining to Multiple Sclerosis, but still a step in the right direction

Information was provided by a few of our e-list members from India:

New Delhi: A single shot of 100 million bone marrow stem cells is helping severe stroke patients return back to normal life!
Given within a month of suffering the stroke that led to partial paralysis, 90% of patients who received the shot at All India Institute of Medical Sciences (AIIMS) during a pilot study regained their ability to carry out simple day-to-day activities like taking a shower or changing clothes within the first six months. Neurologists from AIIMS along with doctors from PGI (Chandigarh), SGPGI (Lucknow), Armed Forces Medical College (Pune) and Army R&R Hospital (Delhi) have been conducting a collaborative trial since June 2006 to see if stem cells taken from the patient’s own hip bone helped repair the damage of a severe stroke after being injected back into the patient’s antecubital vein (in the forearms, near the elbow).

Though the study results of 120 subjects is expected by October, the initial analysis of 19 patients (38-75 years of age) — 11 who received the stem cell shot and eight who did not — have thrown up some exciting results. Dr Kameshwar Prasad, professor of neurology at AIIMS, who will announce this finding at the National Congress of Indian Stroke Association on Friday, said around 90% of 11 patients who received the stem cell shot were able to carry out daily activities like walking, using the toilet, taking a bath, dressing and eating independently, within six months of the stroke.

None of these patients could carry out such activities at the beginning of the study. In comparison, 75% of those who didn’t receive stem cells could perform equally. Again, 50% of those who received stem cell therapy recovered from neurological deficits like weakness of one limb and inability to walk caused by the stroke and greatly reduced their handicap in comparison to 16% in the control group.

As far as managing to carry out previous activities like playing golf, working in office and cooking were concerned, 45% of those who received the shot showed progress as against 12.5% of those who didn’t receive stem cells. Dr Prasad said, “We will complete our analysis by October on 120 patients and only then will we know stem cells’ actual benefits on stroke patients. Till now, 52 patients are being analysed.”

He added, “However, an initial analysis on 19 patients, findings of which will be presented at the conference, has thrown up very positive results. After carrying out Pet scans and MRIs, we can also confirm that stem cell therapy has proved safe with no negative side effects whatsoever.”

Funded by the department of biotechnology, which has shelled out Rs 2 crore, the trial started in June 2006. Dr Prasad said the study was expected to finish by October 2011.

This is how stem cell therapy works — physicians remove stem cells from patient’s bone marrow from hip bone, purify them and intravenously return them to the patient within a few hours. Research shows that stem cells have an instinctive guidance system and migrate to the area of injury.

MARROW ESCAPE
90% of 11 patients who received the stem cell shot were able to carry out daily activities like walking, taking a bath, eating independently, within six months of the stroke
50% of those who received stem cell therapy recovered from neurological deficits like weakness of one limb and inability to walk Research shows that stem cells have an instinctive guidance system and migrate to the area of injury!!

More articles on this finding, can be read here


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Thursday, March 11, 2010

CCSVI- Another MS Patient's Turn for Liberation


CCSVI-It's My Turn - March 10, 2010

imagesCAROUZO7“There are risks and costs to a program of action. But they are far less than the long-range risks and costs of comfortable inaction.”
John F. Kennedy

I've been posting here for a couple of months about a new theory of the root cause of MS, called CCSVI. I’ve spoken to, called, emailed, blogged, private messaged, posted on message boards, Skyped, tweated, and Facebook chatted with so many people. I did all this to gain a better understanding of the relationship between CCSVI and MS, and I did this to find out what my options were for treatment. I am happy to say that the time for talk is over, and the time for action is here.

I met a wonderful group of MS patients who studied CCSVI even more than I did. They put me in touch with a doctor who is forward-thinking enough to start diagnosing and treating MS patients right now. Most of the folks in this group have already been treated for CCSVI. Now, thanks to them, it’s my turn.

On Sunday, my wife and I will be packing up the wheelchair van and driving to a “far away” hospital to spend a week or so with Dr. X, an Interventional Radiologist and Chief of Radiology at a major hospital. On Monday and Tuesday the 15th and 16th, I'll be going through some diagnostic activities (MRV and Ultrasound). On Wednesday the 17th I expect to have a venogramand angioplasty (if warranted) on the veins that drain my central nervous system. No green beer for me on St. Patty’s day this year. I’m not exactly sure when I’ll be home- probably a couple of days later.

Dr. X asked me to keep his identity confidential, so that he is not inundated with requests that he cannot handle at this time. As soon as I am given the okay to disclose his contact information, I will.

Because many of you are interested in what I'll be going through with this experimental treatment, I plan to blog about the details of my experience on a regular basis -- hopefully at least once per day while I am at the “far away” hospital.

Although I am very encouraged by the possible connection between CCSVI and MS, I have to be realistic about the chances that this will make a difference in my life. In other words, I am managing my expectations. This is how I operate. Others, in a similar situation, might effuse optimism. To each his own. Perhaps this will slow down or stop the progression of the disease. Maybe it won’t help at all. But one thing is certain. If I do nothing, then I know where this thing is headed.

For some basic information about CCSVI, and its potential relationship to MS, please read my previous posts on the subject.

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LDN Aware is to spread public awareness of LDN worldwide

Welcome to LDN Aware!

LDNaware.org is your worldwide gateway to Low Dose Naltrexone information, resources and events. Whether you are looking for a pharmacy or just need general information about LDN, we have it covered. We have conveniently set up information based upon country of origin to make it easy to obtain the information you need.

The mission of LDN Aware is to spread public awareness of LDN worldwide. It’s not to raise funds for clinical trials. It’s not to petition or lobby governments. It’s not to influence physicians or researchers. While all very important, there are already many dedicated people working on these initiatives. LDNaware.org is all about telling your friends, your family, your neighbors and co-workers that there is this low-cost, non-toxic drug that can have a profound effect treating a broad range of autoimmune diseases, cancer and HIV/AIDS. LDNaware.org is a grassroots movement that aims simply to increase the number of people worldwide who have heard about LDN.

Sign up for our free bi-monthly newsletter under the newsletter link; it only takes a few seconds! We also encourage you to interact on our forum board where you can ask questions and get answers, and participate in our MS survey.

The more people who know about LDN, the more people will benefit from LDN.

The LDN Aware Project Team
http://www.ldnaware.org



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Tuesday, March 9, 2010

THE Multiple Sclerosis Resource Centre (MSRC) Tysabri Diaries

Did you know that if you are a Tysabri® user, you can have your own place to write diary or journal entries?

From the MSRC-Uk:

To aid those who may have been prescribed Tysabri® or those thinking of asking their Neurologist to prescribe Tysabri® we at the MSRC have enlisted the help of a number of people with MS who are now currently taking Tysabri® to provide some insight into how they went about getting given the drug and how the monthly infusions have changed, or not, their condition.

If you are currently taking Tysabri®, and would like to join our panel of "Diarists" please contact the MSRC Webmaster at squiffy@msrc.co.uk


Sure, here you can even join me, as I am a recent newbie to this journal:


Hoping to learn more, from those that write on this site...


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MS Patients to remain Malware-Free

The information found here, was provided by the internet guru from the MSRC-Uk, and will help you to remain malware free.

Squiffy says:

As always I recommend using/downloanding Malaware Byte's Anti Malware programme, this gets rid of EVERYTHING nasty in one pass.

You can download it from here for free-
http://download.cnet.com/Malwarebytes-Anti-Malware/3000-8022_4-10804572.html?part=dl-10804572&subj=dl&tag=button , it is easy to set up.

Once downloaded and up and running, do an update by clicking on the update tab and then run it in "Perform Full Scan" by clicking the appropriate button.


Hope that helps.
squiffs

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Sunday, March 7, 2010

First vascular intervention in Australia for a Multiple Sclerosis patient

Hi Stu,

I thought you may add this info as a news item on your site.




It is the first vascular intervention in Australia @ the Alfred Hospital Thursday 4th March. It followed very abnormal low blood flow detected in my internal jugular veins via Color Doppler Ultrasound @ Melbourne Radiology.


There are 7 more PwMS scheduled for venograms in the next week or so. Many more PwMS with similarly abnormal Dopplers will be attending the hospital in the next few months.


All the best from Oz
Regards
..Adolfo
aka avantitech/Andy Capp


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