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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, February 27, 2010

Wanted: People with MS to participate in no-cost programs of learning and fun

MARCH MADNESS
The MS Foundation has three important updates.

The first:
Wanted: People with MS to participate in no-cost programs of learning and fun
http://www.msfocus.org/news-details.aspx?newsID=47


then: Free Access to Experts on MS and Mobility


and the last (for now):
MS Experts Want Your Questions on Engaging Life with MS

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How to perform doppler examination in a multiple sclerosis patient

Dr. Marian Simka (of Poland) has written a description and an instruction to the doppler ultrasound examination in a multiple sclerosis patient. This examination allows discovering chronic cerebrospinal venous insufficiency (CCSVI).

Click: http://goo.gl/atGw to review

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What CCSVI Treatment Meant to one MS patient and current cost for treatment in Poland

Information found here, posted on February 27, 2010

Steven Simonyi-Gindele's wife Ruth had the CCSVI diagnosis in Poland from Dr Simka and the Liberation treatment from Dr. Ludyga on December 29, 2009. Steven says "Dr. Ludyga and Dr. Simka are careful, skillful, caring specialists. They are using the latest equipment in ultra modern facilities. We were treated first class both medically and were shown great hospitality no pun intended. The Liberation treatment is the best investment we ever made. We remain ever so grateful to Dr. Simka and Dr. Ludyga. We continue to pray for them. Ruth has lost the horrible constant tiredness and is becoming more like her old self. I feel that a huge burden that I did not know that I was carrying, has been lifted."
Write Steven if you want to know more. simonyigindele@yahoo.com
Or leave a comment in the field found below this blog posting. If you want to be contacted directly, you must leave your name and email address.

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See below for the Current pricing found in Poland for Treatment.
Remember that the pricing is based on the EURO

Hello,

The current fee is €6900, but now includes hotel and more..:


"Since 25th January 2010 the costs will amount to:
- 6 900 euro : angioplasty with stenting – 1 stent (if more than one stent is placed, each additional stent costs 500 euro)
- 6 400 euro : angioplasty

The price includes:
- Vascular surgeon/angiologist consultation
- Color Doppler ultrasound examination
- MRI examination
- Endovascular procedure (angioplasty or stenting)
- introductory consultation with the leading doctor
- 5-night stay in 4-star hotel (breakfast included)
- Transportation to the examination and procedure facilities (Doppler, MRI, surgery)
- Transportation from/to Pyrzowice (Katowice) or Balice (Kraków) Airport
- EuroMedic personnel assist during your stay
- telephone hot-line assistance

- If for medical reasons angioplasty or stenting cannot be performed the package price amounts to:
- 2 700 euro : Full diagnostics with phlebography
1 800 euro : color Doppler ultrasound and MRI examination"

from the letter of Tomasz Ludyga, Director of EuroMedic



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Friday, February 26, 2010

Social Networking with MS Views and News

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Yes, It Snowed and Snowed and Snowed

Picture provided by I-Reporter : Erica T - from Scarsdale, NY -
Photo taken mid Friday Morning 02.26.10




Erica had to walk to the Train Station this morning.
Roadways were not conducive to Driving

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Remain Up to Date with MS News and Information

For those that do not know, I too have Multiple Sclerosis. It was when I was diagnosed years ago, that I got heavily involved with providing MS information for those that had diffiuclty on knowing where to learn and be educated with this illness. Now I empower tens of thousands of people with MS Knowledge. - Stuart Schlossman-RRMS



"Providing You with 'MS Views and News', is what we do"

Upon receipt of this information, take note that our weekly MS related e-Newsletter
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Whether an MS patient, a caregiver or a medical professional:

If you are not yet receiving the weekly MS e-Newsletter, titled "Stu's Views and MS Related News", or having access to our website and MS blog, then please consider registering after reading the information found below:


Enter a place where information and knowledge is provided for anybody affected by Multiple Sclerosis.This includes the patients, caregivers, medical providers and/or anybody just interested in having availability to MS information.

"MS Views and News" is Unique in what we do; Bridging the gaps to all major MS organizations. Providing information and knowledge.


On our website's homepage (http://www.msviewsandnews.org), you will find a link to register for our website and weekly e-publication of "Stu's Views and MS Related News", an MS e-Newsletter.

A Must see is our MS BLOG (http://wwwmsviewsandrelatednews.blogspot.com/), where you will find easy-to-read MS articles. Thru this blog you will have access to many other MS informational resources and organizations as well as other MS bloggers. Find the category listings and other links found on the right side column of this blog to help you to better understand Multiple Sclerosis.

Other features of the MS Views and News website include:

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* Additionally, click the link found on the left side of homepage to view our Library of MS Archives then use the search box to find what you need.

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(This is beneficial for family members/caregivers who don't read or fully understand English, but need Multiple Sclerosis information).

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MS And Cancer - an MS Patient needs your help

Provided by John Donnelly in Ireland:

My wife has stage 4 lung cancer and was given 2 to 6 months 18 months ago. she is on LDN and doing great. We have an opportunity to get LDN on TV here in Ireland but we need help. The link below is for a competition and we need to stay in the top 10. Please give us your support and click on the link and support our proposal Thanks in advance





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Keep Informed with News and Information regarding Multiple Sclerosis. If not yet receiving the "Stu's Views and MS Related News", weekly M.S. e-newsletter, then please take 20 seconds to register at: http://www.msviewsandnews.org. - Thank you

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BACK to Work after 30 years - HUMOR for ALL

For those over 40, you might get a chuckle to
see this video of a women who has not worked in
over 30 Years.

On Her first day back on the Job:


video



If you or someone you know, is affected by Multiple Sclerosis, register or let them know to register, at : http://www.msviewsandnews.org - to begin receiving a weekly ms related e-newsletter, published by an MS Patient, for others affected by this disease.

Thursday, February 25, 2010

Copaxone® 15-Year Study in Multiple Sclerosis Patients Demonstrates Robust Long-Term Efficacy and Safety

February 25, 2010

  • More than 80 percent of patients were able to walk unassisted following 15 years of treatment and average disease duration of 22 years
  • The majority of patients experienced either stable or improved disability rates, as well as a 78 percent reduction in annualized relapse rate (ARR) from baseline

JERUSALEM--(BUSINESS WIRE)--Teva Pharmaceutical Industries Ltd. (NASDAQ: TEVA) today announced the publication of data from the 15-year clinical study with Copaxone® (glatiramer acetate injection), which is the longest prospective and continuous evaluation ever conducted in relapsing-remitting multiple sclerosis (RRMS) patients. The data were published in the February issue of the journal Multiple Sclerosis.

“The longest term study extension further demonstrates Teva’s investment in Copaxone® and our ongoing commitment to improve the disease course of MS.”

The 15-year clinical study demonstrated that more than 80 percent of patients were still walking without assistance despite a mean MS disease duration of 22 years, and two-thirds of patients have not transitioned to secondary progressive MS. Patients who remained in the study over a mean of 15 years showed a reduction in annualized relapse rate (ARR) from baseline as well as minimal increase in Expanded Disability Status Scale (EDSS). On average, the ARR in the ongoing cohort declined from 1.12 ± 0.82 to 0.25 ± 0.34 at the 15-year analysis.

Additionally, the study reinforces the established long-term safety profile associated with Copaxone®. The most common adverse events associated with Copaxone® were local injection-site reactions and immediate post-injection reactions. No other immune-mediated disorders, infections or malignancies were reported.

“This study is important for the MS community as it further confirms the benefits of continuous long-term use of Copaxone® and its ability to effectively slow the natural progression of this disease,” said Corey Ford, M.D., Ph.D., primary investigator in the study and Professor of Neurology, Director of the Multiple Sclerosis Specialty Clinic and Assistant Dean for Research at the University of New Mexico Health Sciences Center. “It is encouraging to see such long-term results that further support the well-established benefit-to-risk profile of this treatment relevant to a life-long disease.”

"We are pleased to see that results from this study reinforce the long term efficacy and safety of Copaxone®,” said Moshe Manor, Teva's Group Vice President, Global Branded Products. “The longest term study extension further demonstrates Teva’s investment in Copaxone® and our ongoing commitment to improve the disease course of MS."

This study represents the only prospective, open-label follow-up study designed to evaluate continuous immunomodulatory therapy in RRMS patients. The study, currently in its 19th year, was extended to 20 years based on the positive results seen thus far and the interest of the MS community in the long term outcomes of treatments for this life-long disease.

About the Study

The study “Continuous Long-Term Immunomodulatory Therapy in Relapsing Multiple Sclerosis: Results from the 15-Year Analysis of the U.S. Prospective Open-label Study of Glatiramer Acetate,” a follow-up to the pivotal, Phase III trial, followed 100 ongoing Copaxone® (glatiramer acetate injection) patients starting in 1991. Patients’ EDSS scores were evaluated every six months. Confirmed disability progression was defined as ≥1.0 EDSS point increase sustained for six months. Patients were classified as “stable/improved” if EDSS score changes were less or equal to 0.5 points. Proportions of patients who reached confirmed thresholds of EDSS 4, 6, or 8 while on Copaxone®, and Kaplan-Meier (KM) estimates of median times to these thresholds, were obtained.

Fifty-seven percent of patients experienced either stabilized or improved EDSS scores, while 65 percent has not yet transitioned to Secondary-Progressive Multiple Sclerosis (SPMS). While being treated with Copaxone®, the mITT patients’ ARR declined from 1.18+/-0.82 to 0.43+/-0.58/year.


Continue from this Business Wire report


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Keep Informed with News and Information regarding Multiple Sclerosis. If not yet receiving the "Stu's Views and MS Related News", weekly M.S. e-newsletter, then please take 20 seconds to register at: http://www.msviewsandnews.org. - Thank you

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Wednesday, February 24, 2010

An MS Patients Blog posting of His Stem Cell Therapy treatment

Written by: zhenya stolyar

August 25 i had the extraction at the xcell center in Dusseldorf.

their success rates with MS were not great, but i had spoken to a patient who went through it , i felt confident. Everyone was very nice. The doctor there that advised me, had looked through the case i sent him and was very hopeful that stem cells would help. Xcell did not promise anything and pointed out several times that nothing is guranteed and that i may feel nothing.

being in bad shape already, i did not care and went to Germany with my mother. At that point i could barely walk. Van took us to and from the clinic and they do have vans with wheelchair access, there are also coordinators all over the world to help facilitate everything, mine was in Houston and communicated with me fairly promptly, Within a week from sending them my letter i was approved and scheduled.

They asked for Doctors notes, a personal history and mri reports.

The clinic is licensed and in fact only licensed clinic in EU. hardly india or china even.

Doctor who did both extraction and reimplantation was a neurosurgeon with long history and credentials, and the one that advised me was an anesthesiologist, there was a cardiologist on staff as well as a very professional nursing staff. The Hospital was very clean, and rooms nice.

August 27 was re-implantation and i started to feel improvements in January. Walking dramatically improved although i have severe problem with hand and why this letter is difficult to put together. Hopefully, its more usable tomorrow, ill write more. :)

xcell has 2 centers not far from each other, but the dusseldorf is the newer center, where stem cells are processed and counted.

it was not cheap although in grand scheme of things not overly expensive. biggest problem is dollar value.

i am sorry to give a liink for additional info, but if any questions remain feel free to ask.

overall i
would do it again, but now focus is on ccsvi.

X-Cell Center - http://www.xcell-center.com/ Once registered a coordinator will be assigned

mail me any questions you may have or leave comment to this blog posting and Stuart will get it to me.

p.s. - Blog i wrote during my therapy:
http://inzition.blogspot.com/


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An MS Video on Ampyra: A New Medication to Improve Walking - created by the National MS Society

Link provided to me by our friend, The Wheelchair Kamikaze

The National Multiple Sclerosis Society has released a video featuring the noted neurologist Dr. Patricia Coyle, answering questions on Ampyra, a recently approved drug that's meant to increase the mobility of MS patients by increasing the conductivity of damaged nerve cells

Ampyra (formerly known as Fampridine-SR) and (4-AP), a compound that has been used to treat MS symptoms for decades.

Click HERE to watch this video on You Tube

Come back to this blog to see this video posted on the right side of this page

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Keep Informed with News and Information regarding Multiple Sclerosis. If not yet receiving the "Stu's Views and MS Related News", weekly M.S. e-newsletter, then please take 20 seconds to register at: http://www.msviewsandnews.org. - Thank you

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Requesting help from Canadian Vascular Surgeons and Interventional Radiologists

Presented by Ginger Macqueen

Click to Watch an MS Patient's request for CCSVI Research in Canada


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Keep Informed with News and Information regarding Multiple Sclerosis. If not yet receiving the "Stu's Views and MS Related News", weekly M.S. e-newsletter, then please take 20 seconds to register at: http://www.msviewsandnews.org. - Thank you

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A Cardio Vascular Center in Florida seeks the Protocol for the CCSVI Stent Treatment

A Cardio Vascular surgeon contacted me yesterday and again we spoke today. He and his team are very interested in learning more and doing research for the stent operation. One of the things he told me of the risk involved is that to place a stent in a vein is dangerous because as the blood flows back to the heart, the pressure is strong and the vein dilates (not the word he used).

There is strong possibility that the stent would migrate and when this migration happens, it can lodge in a place that could be life threatening. THIS is one of the reasons why more research is needed before they just start putting veinous stents into people.

ANYWAY though, he asked me to find other CCSVI researchers that he can contact. So, If you have a way to get this information to me, it can help to provide another research team to look into this hopeful resolve.

Best Wishes,



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MS LIBERATION

The discovery of chronic cerebrospinal venous insufficiency (CCSVI) by Dr. Paolo Zamboni opens a new door for multiple sclerosis (MS) research. However, the first hurdle is the testing, which is not being requested by doctors or specialist.

This website has been created to unite Canadians into action to help expedite testing and research relating to CCSVI.



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Keep Informed with News and Information regarding Multiple Sclerosis. If not yet receiving the "Stu's Views and MS Related News", weekly M.S. e-newsletter, then please take 20 seconds to register at: http://www.msviewsandnews.org. - Thank you

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Staying on Track with goals

Shmoozin' with Susan an OT's Perspective

Staying on Track


It has been several weeks since we celebrated the New Year, the time when resolutions and goals are typically set. I wonder just how many people are still on track with them. It doesn’t take much to give up, forget, and lose focus.

I can proudly say, for the first time, I continue with the goals I had set in January. I wanted to do more for my body as best as I could. I started taking vitamins, began an exercise routine, and incorporated meditation. I have a set schedule for taking my vitamins as I do my medications. I make sure I exercise during the week which I vary (eliminates getting bored and adjusted to how I feel) between swimming, weights (lights), yoga, and range of motion exercises. Meditation has also been important to rest my body and mind. I do what I can, when I can and sometimes have to push myself to do even a little bit at some point.

Whatever your goals or resolutions are, remember to be realistic, start small, stay focused and positive. I remember the story The Little Train That Could and had to struggle uphill with his cargo. It would say over and over again… “I think I can, I think I can”…. and it accomplished its mission. I think it’s a good way to start the thinking process, “I think I Can”. I believe with commitment, determination and the power of positive thinking, that train of thought can change to “I Know I Can”. Don’t stop because of bumps in the road, these things will inevitably happen. Gather up steam again and move forward. Use the many resources available to help you stay on track, even if that includes a kick in the caboose!

Happy Trails!

Susan Dorne, OT

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Monday, February 22, 2010

An MS patients' views of his current Drug therapy for Multiple Sclerosis and about Quality of Life

Written By Stuart Schlossman - February 22, 2010

Albeit, I was not confident in having to make the decision to try this medication that has many questioning themselves and their doctors.. Many negative rumors, yet so many positive things to say of it, that there are many websites, bloggers and facebook fanatics (fans) who often voice their opinions..

And so, now there will be another opinion to read. Mine.
This is about the MS medication called: Tysabri® (Natalizumab).

Sure there are many that are going to read this, that may still not be convinced. I just want to say that I am not trying to convince you of anything, and nor am I getting paid to promote or write what you will see below.

Like so many others, I have an opinion to write.
Like many already know of me, from past opinions and how I have treated my body with medications, many know what I have gone through in the past and for those that want to know more, just click and read the About Stuart link found on this blog.

Enough rubbish, let me get started...

My Tysabri experience thus far. - I will soon be having my fourth infusion and I greatly look forward to it. Sure it is more time consuming that just doing a shot, but it most certainly puts less piercing holes into my body. Instead of having to inject once a week, daily or 3 times per week, I just need to be infused once every 28 days or 13 times per year versus, well you can each do the math on how many times you may need to pierce your skin.

I want to admit The amount of increased energy I have had. Allowing me to do that much more for myself, my family and for my MS peers (via my website, my ms blog, my weekly ms e-newsletter, facebook, twitter and arranging programs). YIKES, yes, just reading this could make you tired. But I wonder if for those also doing "T", if they feel the same as me and are reading this differently than those who are not using this medication?

Aside from Increased energy, I have More Vitality, Clarity (clearer thinking ability and thoughts),
better ability to "reason" or add or decipher situations. Feeling more confident than even my normal arrogant confidence. Yikes - LOOK OUT world!! Yes there must be some humor with this too as just a few months ago, I did not think this was possible: to feel strong again.

My balance and gait are better and my cane is sitting idly on the back seat of my car, asking when he'll be used again? Yes, I can hear it talking on occasion, especially when I am getting ready to enter a large store. "Nope" I tell it. "I am not needing to use you today".

I am feeling more complete, more whole as I did, years ago.

I want to: do, do do.. But this too, is not good, because 'I over-doing things' and this is taking away from the good that this medication does for me. Yet still I have that much MORE desire To DO. Know what I mean? This 51 year old guy is feeling forty. Maybe thirty-nine but I will say forty for now.

Would I like to run a triathalon? Sure, but will it happen? No. Only because I was never a runner. Do I have desire to play Rugby or Lacrosse? Yes, but these too are not going to happen, but the desire is there.

I am Absolutely not ready to sky dive or do some bungy jumping. So if I say I do, it would be indicative that something was wrong with my mind... Take me to my doctor and say, he "isn't right".

Now let me get serious:
The bottom line for me, came when I realized I was using my cane almost all the time and when I realized that I was becoming acceptant to the disease progression.
Why was this? Why was I just accepting that MS is a progressive disease and I will worsen?

When I was first diagnosed, the neurologist I was seeing told me that he did not want to put me onto an ms therapy because the side effects were worse that the stage of the disease I was in. That we should wait until things worsen and then consider a medication.

Yea sure, I was going to wait until I got worse? Learning that the damage done to the myelin could not be reversed and I should wait? No way. I found another doctor, more aggressive in treatment regiment and before leaving his office he was putting me onto a DMD (disease modifying therapy).

And so, when thinking back to that experience many moons ago, I asked myself are you going to wait or are we ( the "royal we") going to be aggressive again.

And so, I opted to try this "T" Therapy. Having learned that no problems (PML) have been found in any ms patient during the first year of treatment therapy, I opted to give it a year to see what happens and then to re-evaluate at the end of year one.

Maybe more will be known of the dreaded JC Virus. But this, I try not to think about and instead, think only of the good that I have been feeling these last few months.

Good timing too. With summer coming around the corner, I now have the desire and energy needed to go swimming when the weather warms up my pool. Last year, I didn't even have energy to go for a swim and now I look forward to doing laps. And soon will need to do some real gardening that I have not been able to do the last few years or maybe even re-begin walking (more than a mile a day) as I once did, prior to three years ago.

Another admittance: Although I have more energy I still need periods of rest as fatigue, albeit much less than prior, still does occur. My mind and fingers admit that after writing this essay, it's now time for a rest...

The point of this message is to confirm to myself, why I decided to accept the "T" medication to give me back some Quality of Life, rather than just accept disease progression thus allowing life to go forward without me...... As I said earlier: Nope to my cane and Nope to not living with some QOL.


Have a good day...And remember that this blog posting was just, me venting...

If you would like to reply to this message by leaving a comment, I would appreciate all to leave comments at this MS Blog posting. For those at facebook, twitter or the other sites that this will feed-to, come back to this blog and search for the posting by using the title of this post.


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Help me to educate others affected by MS.
Keep Informed with News and Information regarding Multiple Sclerosis. If not yet receiving the "Stu's Views and MS Related News", weekly M.S. e-newsletter, then please take 20 seconds to register at: http://www.msviewsandnews.org. - Thank you

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