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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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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 
.
.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.

Thursday, August 25, 2011

Effectiveness of CCSVI Treatment

CCSVI is undoubtedly one of the major discoveries in medicine this century. To actually define a new medical condition with anatomical abnormalities is a breathtaking development.

It is no surprise that it has created considerable controversy in the medical world. How could we have missed something so important and indeed there are some published papers which cast doubt on the very existence of CCSVI? Having observed the lesions on Doppler ultrasound, venogram and with intravascular ultrasound, it is clear that this is a real condition and in time all doubts will be cast aside.

The area where there is still some doubt however is whether treating these lesions produces a worthwhile clinical benefit.

CCSVI is a great discovery but is it a breakthrough in treatment for patients with MS and other neurovascular conditions?

The Bologna conference in March 2011, from the International Society of Neurovascular Disease (ISNVD), was a great platform for the presentation of new research into CCSVI. It was also a good forum for introducing the next generation of studies which are aimed at investigating the effectiveness of CCSVI treatment.

The current president of ISNVD is Professor Robert Zivadinov; a consultant neurologist from Buffalo University in New York. His background is in Multiple Sclerosis research mainly into pharmaceutical treatments for the disease. It was very clear from his conference presentations, and in conversation, that he is an academic heavyweight who has concluded that CCSVI is a very important area requiring clinical investigation. He is involved in one of the three randomised controlled trials into CCSVI treatment and has a strong association with Paulo Zamboni and the University of Ferrara.
This combined team from these two Universities, Buffalo and Ferrara, have published an early trial on the effectiveness of treatment in the European Journal of Vascular and Endovascular Surgery (1).

Although the number of patients was small, fifteen in total, the results are suggestive of a positive effect from CCSVI treatment. There was no control group in the study but the angioplasty treatment was staggered with a group of eight patients treated initially and the other seven treated after a six month delay.

One of the traditional study endpoints in MS is the frequency of relapses which was reduced in the early treatment group. Two of the initial group had a relapse in the next six months as opposed to five from the seven who were in the delayed group (had not been treated at that point). Of even greater significance was the fact that the brain volume of the treated group was reduced compared to the untreated group. This would suggest that treatment of the venous outflow from the brain, reduces swelling and inflammation. As Prof Zivadinov suggests, the numbers are too small to make any firm conclusions but the positive outcomes give great encouragement for future research.

As part of our ongoing investigative approach to CCSVI treatment in Scotland, we are collecting a large amount of data
including an independent assessment of neurological function. Early indications are that our results are very similar to those being published and presented at International conferences. It will be some time before we have the data fully analysed but we are very encouraged by the objective improvements reported both here in the UK and abroad,

The largest randomised controlled trial is due to start in Italy , BRAVE DREAMS, is looking at several hundred patients and will hopefully be of a size that can allow more concrete conclusions to be drawn.

Read More on CCSVI from Essential Health Clinic
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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.

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 
.
.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.

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 
.


.===========================================================
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.