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Friday, August 26, 2011

An MS patient's perspective on CCSVI and questions he has




Stuart,
I heard the radio program the next day [family obligations kept me busy during the show]. I am starting to get a better appreciation for what you do and why

Just to remind you, I am the Red Sox fan who had the CCSVI procedure successfully done and was a little quick to get my point across by calling you directly.  I was actually quite interested in all that Dr. Coetzee had to say.  He was articulate and at some point I would like to see his bio and see exactly the thing he was relating about his PHD and his thinking on new ideas.

I was impressed with his view on CCSVI and clinical trials, however I would really at some point like to address the 4 questions I had asked. I am trying to help bridge the gap that either truly exist or is so strongly perceived that the NMSS is against CCSVI held by most all the patients I come into contact with. Of course it does not help that the headline from the extensive gene study directly slams and denigrates Dr. Zamboni's work. 

The way to get to the bottom line for us ms patients is to combine the studies and come up with some concrete answers for all ms patients. Those of us with SPMS or PPMS are left out in the dark with the other therapies.

The idea of re-mylination is appealing and may be a combination of therapies away from happening. 

CCSVI really works and there is an entire class of Doctors called Interventional Radiologist and other vascular Doctors that will see it through to be mainstreamed with or without the NMSS support. I being a rationale person [even though I am a Red Sox fan ;~) ] would prefer to see it all work smoothly together for the sake of the patients.

Here are the 4 questions I would really like answered to help it all go smoother. 

  • Bill Sullivan ‎1. In light of the CCSVI results we are seeing, when will the NMSS start looking at actual patient trials using Doctors that have experience and success with the procedure.

  •  Bill Sullivan ‎2. Given the fact that many patients have had the CCSVI procedure done, and many more are planning to have it done, does the NMSS feel the needs of patients outweigh the ultra cautious approach you have been using.

  •  Bill Sullivan ‎3. Will the NMSS get behind Dr. Zamboni to further his research and fund a full blown study.

  • Bill Sullivan ‎4. Most importantly, perception becomes reality and right now it is perceived among those who have had the procedure done that there is resistance. [OK maybe # 4 was a little over the top so I revised it]....
  • here is what I edited out~ One of the benefits of having the CCSVI procedure done is that cognitive problems disappear and those that have had the procedure done have increased mental capacity to be aware. We are watching carefully and the internet is recording history. 

Lets hope there will be some concrete answers, solutions and above all progress.
Bill Sullivan
Thank you so much!!!
 
Bill Sullivan




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On the 4th Wednesday of each month  
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Disclaimer:  'MS Views and News' (MSVN), 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.

BOTOX(R) (onabotulinumtoxinA) Receives U.S. FDA Approval for the Treatment of Urinary Incontinence in Adults with Neurological Conditions Including Multiple Sclerosis



IRVINE, Calif., Aug 24, 2011 (BUSINESS WIRE) -- Allergan, Inc. today announced the United States Food and Drug Administration (FDA) has approved BOTOX(R) (onabotulinumtoxinA) for injection for the treatment of urinary incontinence due to detrusor overactivity associated with a neurologic condition (e.g. spinal cord injury (SCI), multiple sclerosis (MS)) in adults who have an inadequate response to or are intolerant of an anticholinergic medication.(1) Urinary incontinence (bladder leakage) due to detrusor (bladder muscle) overactivity in patients living with MS or SCI is a chronic condition affecting approximately 340,000 people in the United States.(2) Current standard of care includes oral medications that are taken regularly, known as anticholinergics; however, it is estimated that 71 percent of people stop taking at least one oral medication within 12 months.(3) If oral medications fail, then surgery may be considered (e.g. implanting a neuromodulation device or bladder augmentation surgery).


Continue to read


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Remain CURRENT with Multiple Sclerosis news  and information 
REGISTER HERE   MS Views and News 
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.Providing You with 'MS Views and News', is what we do 
.
On the 4th Wednesday of each month  
Listen-to StuMSRadio.com at 8pm eastern time.
Each month will feature various guests to be interviewed
Call-in to have (5) minutes of airtime.
Speak about your MS or ask questions 
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"MS Views and News" is a 501©(3) Not-for-Profit organization as recognized by the Internal Revenue Service 
.. All contributions are tax deductible to the fullest extent allowed by law 
.===========================================================
Disclaimer:  'MS Views and News' (MSVN), 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.

Thursday, August 25, 2011

A device to help wheelchair bound patients to stand more freely

The EasyStand StrapStand is a strap-style stander for adults from 5' to 6'5'' (152-196 cm) and up to 350 lbs (159 kg). The StrapStand can accommodate many unique needs of wheelchair users, from those with low-level spinal cord injuries to multi-user settings. The StrapStand lifts you directly from your wheelchair, bed, or other seated surface into the standing position. Benefits of the EasyStand StrapStand include:
  • No-transfer needed –If you are not capable of, or may not feel comfortable with transferring, you can use the StrapStand because no transfer is needed.
  • Over-center stretch – For specific body-types, the StrapStand can provide the maximal over-center stretch needed for the optimum standing posture.
  • Familiarity in nursing homes – Since it has some features similar to a patient lift, both clinical staff and patients feel more accustomed to it in an assisted living setting.
  • Compliance – When transfers or patient lifting are a concern for staff or caregivers, a standing program can still be practiced because transferring is not required.
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Remain CURRENT with Multiple Sclerosis news  and information 
REGISTER HERE   MS Views and News 
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.Providing You with 'MS Views and News', is what we do 
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On the 4th Wednesday of each month  
Listen-to StuMSRadio.com at 8pm eastern time.
Each month will feature various guests to be interviewed
Call-in to have (5) minutes of airtime.
Speak about your MS or ask questions 
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"MS Views and News" is a 501©(3) Not-for-Profit organization as recognized by the Internal Revenue Service 
.. All contributions are tax deductible to the fullest extent allowed by law 
.===========================================================
Disclaimer:  'MS Views and News' (MSVN), 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.

Self-Defense & Online Predators

Source: Easy Stand

by TIFFINY CARLSON on AUGUST 3, 2011
In episode #76 of No Free Rides, I am joined by Erik Kondo, a paraplegic and self-defense and online safety expert. We discuss how to stay safe in the physical world, as well as how to protect yourself online, namely from wheelchair fetishists.
Erik has been a paraplegic for over 25 years, making him more than qualified to dispense advice on this sensitive subject. He is the founder of Not-Me.org, a non-profit dedicated to teaching the five D’s of self-defense – Decide, Deter, Disrupt, Disengage and Debrief. Erik is a fountain of information and his advice is a must for anyone new to being disabled!
We also discuss how to spot wheelchair predators online, as well as those pretending to be a wheelchair-user (“pretenders”), which is another tactic that is used to pry personal information from unaware individuals.
Check out Erik’s self-defense site, Not-Me.org, for more information on staying safe no matter the situation.  There’s a related blog post that you might be interested in reading “Ability To Protect: Self Defense for Wheelchair Users” written by Mike Duenas, ATP. 
Use the player below to hear the show (52 minute run time). No Free Rides is sponsored by EasyStand.


Click here to scroll to the bottom of the originating article so that you can listen to the above mentioned player
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.Providing You with 'MS Views and News', is what we do 
.
On the 4th Wednesday of each month  
Listen-to StuMSRadio.com at 8pm eastern time.
Each month will feature various guests to be interviewed
Call-in to have (5) minutes of airtime.
Speak about your MS or ask questions 
.


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Disclaimer:  'MS Views and News' (MSVN), 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.

Wednesday, August 24, 2011

Clinical trials (underway) using adult stem cells to treat MS (video)


Published: Tuesday, August 23, 2011, 6:00 AM     
By Angela Townsend, The Plain Dealer 

CLEVELAND, Ohio -- Each year in the United States, about 10,000 people are diagnosed with multiple sclerosis. A long-term treatment that not only relieves symptoms but also repairs the damage caused by the disease has eluded researchers.
Now, the Cleveland Clinic, University Hospitals Seidman Cancer Center and Case Western Reserve University are collaborating on a one-of-a-kind clinical trial in the United States, designed to treat, or even reverse, the debilitating effects of multiple sclerosis by using a patient's own adult stem cells.
Mesenchymal stem cells, or MSCs, are found in the bone marrow. More than 150 other clinical trials in the United States and around the world are currently testing MSCs' ability to encourage tissue repair as a way to treat a variety of other conditions such as osteoarthritis, diabetes, emphysema and stroke. Stem cell therapy is already used to treat leukemia, lymphoma and certain blood disorders.
In the Phase One trial here, a patient's MSCs are harvested at UH, carefully cultivated in a special laboratory at CWRU and then injected intravenously back into the patient at the Clinic.
Since June, two patients have undergone the entire process. A third is scheduled to receive an infusion of MSCs on Monday. A total of 24 patients with relapsing or progressively worse MS who have moderate to severe disability will take part in the study over the next two to three years.
The primary aim is to test the feasibility and safety of using the body's own stem cells to treat MS. But researchers also are looking closely for any preliminary evidence that the transplanted cells could moderate the over-active immune system, possibly stopping or even repairing tissue damage.       



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Remain CURRENT with Multiple Sclerosis news  and information 
REGISTER HERE   MS Views and News 
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.Providing You with 'MS Views and News', is what we do 
.
On the 4th Wednesday of each month  
Listen-to StuMSRadio.com at 8pm eastern time.
Each month will feature various guests to be interviewed
Call-in to have (5) minutes of airtime.
Speak about your MS or ask questions 
.

"MS Views and News" is a 501©(3) Not-for-Profit organization as recognized by the Internal Revenue Service 
.. All contributions are tax deductible to the fullest extent allowed by law 
.===========================================================
Disclaimer:  'MS Views and News' (MSVN), 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.