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Friday, January 16, 2009

An Author, Doctor, Mother, and Patient - Overcoming Secondary Progressive MS

An Author, Doctor, Mother, and Patient ( Yes, All ONE patient with MS ) writes of her story:

In 2000 Dr. Wahls was diagnosed with multiple sclerosis. Unfortunately within three years it was apparent she had progressive multiple sclerosis and was experiencing relentless loss of function. She required a cane, and then a scooter. As her mobility declined, Dr. Wahls gave up being the medical director of the VA Midwest Health Care Network to minimize the need to travel out of town. She has continued to see patients, teach medical students and residents, and conduct clinical research.

Through her own research into the clinical studies and basic science studies of multiple sclerosis and the neurodegenerative diseases Parkinson’s, Huntington’s, amyotrophic lateral sclerosis, and Alzheimer’s, Dr. Wahls designed a new treatment protocol for herself.
Please remember that comments written to these stories, can benefit others.

Thursday, January 15, 2009

The REGARD Study – A Head-to-Head Comparison of Rebif®® (glatiramer acetate) 44 mcg (interferon beta-1a) and Copaxone

Initial information provided by Cherie Binns
The trial cited here compared several hundred Rebif users and Copaxone users for 4 years finding that both meds are safe and effective.

( to view the links found below- may require you to register with WebMD)

The results of the REGARD* study were presented at the recent 23rd Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS). The REGARD study compared Rebif (interferon beta-1a) 44 mcg and Copaxone (glatiramer acetate) over 96 weeks in patients with relapsing-remitting MS. Principal investigator, Daniel Mikol, MD, PhD, from the Department of Neurology at the University of Michigan, Ann Arbor, provides some first-hand insight into the findings of the study.

Q. What was the overall rationale for the REGARD study and what information were you hoping it would provide?

Dr Mikol: The REGARD study was the first well-controlled, randomized, head-to-head study between any interferon-beta and glatiramer acetate. The interferon-beta preparation used in the study was Rebif, and the study was sponsored by EMD Serono and Pfizer, co-marketers of Rebif in the US.

It's well accepted that the best way to gauge the relative efficacies of 2 agents in a disease such as relapsing-remitting MS is to compare them head-to-head. Prior to this study, the only way to try to compare interferon-beta and glatiramer acetate was by using results from the individual placebo-controlled studies — different trials with different patient populations, and trial designs that differed somewhat from one study to another. So in conducting the REGARD study, the intent was to use the same population of patients and the same study design to determine whether one agent was superior to the other.

To continue reading the contents of this article, will require you to be registered with WebMD.

Leaving Comments, Suggestions and/or Questions, are Always Appreciated. - Thank you

Wednesday, January 14, 2009

Paroxysmal Symptoms of Multiple Sclerosis

While Sudden and Often Alarming, Paroxysmal Symptoms Do Not Indicate a Relapse

By Julie Stachowiak, Ph.D., - Updated: December 16, 2008

Many of us with multiple sclerosis (MS) have experienced the phenomenon of paroxysmal symptoms -- those that come on suddenly, bother us for a short time (seconds or minutes), and then disappear as suddenly as they came.

Whether it is an episode of double vision or a prickly feeling on my face, these moments usually lead me to wonder a number of things. Is this a relapse? How bad is this going to get? Does this mean my MS is progressing?

Eager to learn exactly what doctors know about what I experience, I reached out to the folks at UpToDate -- a trusted electronic reference undoubtedly used by many of the physicians who treat patients with these symptoms (perhaps even yours and mine).

Dig in to this excerpt yourself, then read on for answers to questions you may have about what all of this means for you.

Paroxysmal Symptoms of MS: A Definition from UpToDate

"Paroxysmal attacks of motor or sensory phenomena can occur with demyelinating lesions. These symptoms are characterized by brief, almost stereotypic, events occurring frequently and often triggered by movement or sensory stimuli. They are likely caused by ephaptic transmission of nerve impulses at sites of previous disease activity. Although troublesome to the patient, these symptoms do not indicate a true exacerbation of MS or cause a loss of myelin in the CNS.

"Within the brain stem, lesions may cause paroxysmal diplopia, facial paresthesia, trigeminal neuralgia, ataxia, and dysarthria. Additional symptoms include, but are not limited to, pain, trunk and limb paresthesia, weakness, ataxia, pruritus, akinesia, and seizures. Motor system involvement may result in dystonia characterized by painful tonic contractions of muscles of one or two (homolateral) limbs, trunk, and occasionally the face; these only rarely occur in all four limbs or the trunk."

Fully understanding all of this will not only give you a better grasp of what is going on, but it will help you be better able to discuss your situation with your doctor.

Leaving Comments, Suggestions and/or Questions, are Always Appreciated. - Thank you

Tuesday, January 13, 2009

Merck Serono and Apitope to collaborate on development and commercialization of ATX-MS-1467

Merck Serono, S.A.
January 13, 2009


Merck Serono and Apitope to collaborate on development and commercialization of ATX-MS-1467, Apitope’s peptide therapeutic for the treatment of multiple sclerosis (MS)

Geneva, Switzerland, January 13, 2009 – Merck Serono, a division of Merck KGaA, Darmstadt, Germany, announced today the signature of a research, development and commercialization agreement with Apitope Technology (Bristol) Ltd., a wholly owned subsidiary of Apitope International NV. Under this agreement, Apitope has granted exclusive worldwide rights to Merck Serono to develop and commercialize Apitope’s product ATX-MS-1467.

» Read More

Leaving Comments, Suggestions and/or Questions, are Always Appreciated. - Thank you

EVERY DOLLAR COUNTS in my battle with Multiple Sclerosis

Yes, the economy is bad, but this does not stop Multiple Sclerosis from progressing for those with this, as yet incurable disease.

This is why EVERY Dollar Counts and it could be your next dollar (your contribution) that makes the difference.

Every hour of every day, someone is diagnosed with MS. That's why I registered for the MS Walk and that's why I'm asking you to support my fund raising efforts with a tax-deductible donation.

The National Multiple Sclerosis Society is dedicated to ending the devastating effects of MS but they can't do it without our help. It's faster and easier than ever to support this cause that's so important to me. Simply click on the link at the bottom of this message. If you prefer, you can send your contribution to the address listed below.

Any amount, great or small, helps to make a difference in the lives of people with MS. I appreciate your support and look forward to letting you know how I do.

Click here to visit my personal page.
If the text above does not appear as a clickable link, you can visit the web address:

Click here to view the team page for Hot Shots
If the text above does not appear as a clickable link, you can visit the web address:

Thank You For Your Consideration To HELP ME, To HELP Make a DIFFERENCE.


Stuart Schlossman

P.S. If you would like more information about the National Multiple Sclerosis Society, how proceeds from the MS Walk are used, or the other ways you can get involved in the fight against MS, please visit

Monday, January 12, 2009

Medication Vacations are a No - NO !!

The No-No's of taking Medication Vacations -
Written by; Stuart Schlossman (Jan. 12, 2009)

As many of you are already aware, I took a medication vacation in early 2008 without the consult of my medical practitioners and without the knowledge of my family.

The results were almost catastrophically negative and there is still some residual damage, which probably will never repair until we (Medical science) finds a way to reverse the damages caused to the Central nervous System and Myelin Sheath.

Since my "
error" in judgment ( my experiment ) I have preached the dangers of taking a Hiatus or a vacation from prescribed medication and want to again allow you to read what I did as well as the follow-up stories.

There are thousands of new registrants to my website, and/or who read this blog since I wrote these stories earlier in 2008, and for these people as well as those who have already forgotten, you can read each by clicking on the links shown below in dated order::

My Hiatus from my MS Medication - The Pros and Cons - a valuable lesson learned....

The follow-up OF (the) "My Hiatus" Story ..

An MS Story - POST HIATUS ( 3rd story in this series)

An MS Patients Update to his Medication Vacation

Read each as you have time, then share with others with MS or with any other serious illness requiring Medication Vigilance.

If you have any questions for me or which to leave a comment, please do so, so that others can understand the need for this posting.

All My Best,

Stuart Schlossman
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Living with Advanced Multiple Sclerosis

Living with Advanced Multiple Sclerosis

Multiple sclerosis is a progressive disease for which no cure has yet been found. Although we have treatments to manage the disease course, they are only partially effective, which means that some people’s MS will worsen in spite of everything they and their doctors do to try and prevent it.

Many people ask themselves “Why did this happen?” (Did I choose the wrong doctor or the wrong medication…did I follow the wrong diet or the wrong exercise program…did I get too stressed out at my job?). But the fact is, MS progresses because that is the natural course of the disease.

While researchers are working to identify new and better strategies to stop that progression, people whose MS has become more disabling—and their family members and friends—need information about how to manage the challenges they face.

Continue reading this article from the Originating source of the National MS Society.

Leaving Comments, Suggestions and/or Questions, are Always Appreciated. - Thank you


Information obtained from the National MS Society

You Can...Learn to Manage Your Pain

Last Modified: 2/21/2008

About half of everyone diagnosed with MS will experience some pain. For some it can be a significant problem.


Brochure - Pain (.pdf)

Last modified: 5/28/2008

Learn about the symptoms, severity and treatments of pain for those with MS.


Article - When Is a Prickle a Pain (.pdf)

Last modified: 5/20/2008

From mild annoyance to major assault, MS pain is a pain. Today’s experts have new ideas about management.


Leaving Comments, Suggestions and/or Questions, are Always Appreciated. - Thank you


An MS Patient needs info on MS and Lasik repair

.THIS is wording from the MS Patient ( a peer to most, reading this):

MS patient would like to know if there is anyone out there who has had Optic Neuritis, has myopia and has had Lasik surgery, with no problem at all.

If you can reply, please do so, in the form of a comment. - Thank you


New Interferon Formulations Promise to Eliminate Injections in Multiple Sclerosis Treatment

Gen News


Nerveda Inc. and Aegis Therapeutics LLC today announced preclinical results from their joint collaboration aimed at developing non-injectable formulations of the beta-interferons.

The beta interferons, beta-1a (tradename Rebif(R)), and beta 1b (tradenames Betaseron(R) and Betaferon(R)) are closely related injectable protein drugs in the interferon family that are used to treat both the relapsing-remitting and secondary-progressive forms of multiple sclerosis (MS).

The beta interferons are currently administered by subcutaneous injection and have been proven clinically to slow the advance of multiple sclerosis and reduce the frequency of attacks. Current worldwide combined annual sales of Rebif(R), Betaseron(R) and Betaferon(R) are approximately $4 Billion.

» Read More

Leaving Comments, Suggestions and/or Questions, are Always Appreciated. - Thank you