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Saturday, January 2, 2010

Multiple sclerosis is a frustrating black box


VANCOUVER -- Multiple sclerosis is a frustrating black box. Something is going on in that box that leads to lesions in the brain and damage to the myelin insulating layer on nerve cells. What that means to patients such as Gabrielle Veto is muscle pain, loss of strength, constant fatigue, occasional paralysis and the spectre of life in a wheelchair always lurking beyond the next attack.

"One of the biggest frustrations with MS is that so much is unknown," said Veto, who was diagnosed at the age of 27 when she started to experience abdominal pain in 1996. She had been married to husband Alan Pearce for one year.

Veto's case is like all cases of MS: it is completely unique and unpredictable.

"I ended up in Vancouver General Hospital emergency five times in one week," Veto recalled of her first attack.

At first no one knew what was wrong. Doctors kept looking around the abdomen until her symptoms took a bizarre twist.

Continue reading this patient story and the baffles of MS >> Click here <<


The blood disease that mimics MS - Hughes Syndrome

I was asked to find information on this topic, known as sticky blood or Hughes Syndrome, which is why I am posting it here.
My source for this information comes from the MSRC-Uk as you will see by reading:

Could you have been given the wrong diagnosis?
By Judy Graham

Up to 5% of those diagnosed with Multiple Sclerosis don't have the disease at all. They have something called ‘Hughes Syndrome’, a hidden blood disease which in some ways mimics MS. It is also known as "Sticky Blood Syndrome".

This finding from a study by a leading team of British researchers at St Thomas’ Hospital in London. Instead of having MS, these patients could be suffering from this relatively new disease which mimics some symptoms of MS.

Like MS, Hughes Syndrome can affect mobility, memory, the speech and the nervous system. But the differences. Hughes Syndrome is easy and cheap to treat.

What is Hughes Syndrome?

Hughes Syndrome is the common autoimmune disease that makes blood more sticky or thick and therefore more prone to clotting in both veins and arteries. Lack of awareness of this condition means it is often missed or overlooked.

Sticky blood can affect old and young, men and women alike and is found in all countries. No one knows what causes it although there is evidence that there is a genetic link.

Current research shows Hughes Syndrome is responsible for a fifth of strokes under 45 years, a fifth of cases of deep vein thrombosis, including so-called ‘economy class syndrome’. It is the cause of 1 in 5 recurrent miscarriages. Hughes Syndrome can also mimic Alzheimer's disease, ME, and is linked to migraine. If it is left untreated sticky blood can kill.

MS the wrong diagnosis? -- Continue reading by clicking here -


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Redefining functionality and treatment efficacy in multiple sclerosis

NEUROLOGY 2009;72:S1-S11
© 2009 American Academy of Neurology

John F. Foley, MD and David W. Brandes, MD, MS, FAAN

From the Rocky Mountain Neurological Associates (J.F.F.), Salt Lake City, UT; and Hope MS Center (D.W.B.), Knoxville, TN.

Address correspondence and reprint requests to Dr. John F. Foley, 370 East 9th Avenue, Suite 106, Salt Lake City, UT 84103.

Although our understanding of multiple sclerosis (MS) has grown exponentially in the past century and a half, there is still some divergence between physicians’ perceptions of effects of MS on patients and those of the patients themselves. This article examines current practices in MS assessment and clinical trial design, highlighting certain deficiencies associated with commonly used measurement techniques (e.g., the Expanded Disability Status Scale and MRI) that are reflective of these discrepancies. In particular, the authors note that there is only minimal clinicalawareness of the effects of MS on patient quality of life (QoL). We posit that QoL elements including impaired cognition, fatigue, pain, a variety of visual disturbances, depression, and degrading social function may have at least as much impact on people with MS as ambulatory issues. And because QoL measures often do not correlate with Expanded Disability Status Scale or MRI findings, we recommend that QoL be assessed independently. Various validatedmeasures do exist to assess QoL elements, which are outlined here, along with thoughts on how to incorporate these into regular patient management visits. Ultimately, we believe that expanding on the traditionally accepted definitions of "functionality" and "efficacy" will allow for the adoption of a more holistic picture of MS and its impact.

Supported by an independent grant from Biogen Idec.

Disclosure: Dr. Foley serves on the scientific advisory board for Biogen Idec; he has received honoraria from Teva Neuroscience (for patient education programs), Biogen Idec (for patient and physician education programs) and from Genentech (for physician consulting); he is on the speakers’ bureau for Teva Neuroscience and Biogen Idec; he has received research support from Biogen Idec. Dr. Brandes serves on the advisory board and has received funding for travel from Biogen Idec, Teva Neuroscience, and the National MS Society; he has received honoraria and is on the speakers’ bureau for Biogen Idec, Teva Neuroscience, Pfizer, and Bayer; he has receive research support from the Northridge Foundation for Neurological Research and Education.

Neurology® supplements are not peer-reviewed. Information contained in Neurology® supplements represents the opinions of the authors. These opinions are not endorsed by nor do they reflect the views of the American Academy of Neurology, Editor-in-Chief, or Associate Editors of Neurology®.

source link

Wednesday, December 30, 2009

Multiple Sclerosis: A Breakthrough Is on the Way

A number of improved treatments will be available soon, and Novartis' Fingolimod could lead the way

When Thomas Bullock was diagnosed with multiple sclerosis in 2001, several new treatments for the incurable, nerve-destroying condition had just hit the market. The automotive worker from Ontario spent two years on Bayer's blockbuster Betaseron, an injectable drug that can suppress a hyperactive immune system. But instead of getting better, Bullock endured constant flu-like symptoms and numbness in his limbs. When he developed severe nerve damage, he ditched the injections. "My body just couldn't handle it," recalls Bullock, now 41.

Then, in 2007, he joined a clinical trial for an experimental pill, Fingolimod, from Novartis (NVS). His MS hasn't flared up since. "This is the best shape I've been in for years," he says.

Continue reading from Businessweek.com

Come back and leave your comments at this blog posting.


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Exercise Success Secret for People with MS: Be Confident

I would love to say that I am perfect and talk about my wonderful exercise routine that includes yoga, swimming, strength training and other things that I do to stay healthy. The reality is that I have never really loved exercise, and MS has given me about a million convenient excuses why I won’t put on my exercise gear and head to the gym (of course, I’m always going to exercise tomorrow).

Although there really are many valid reasons for my lack of enthusiasm about exercise -- heat intolerance, fatigue and uncomfortable symptoms, just to name a few –- I am going to resolve to do something physical.

We all know that exercise is good for us –- it helps keep our heart, bones and body healthy. It is especially important for people with MS to be as physically active as possible. It is one of the things we can do to ensure that we stay healthy as we age. Exercise helps reduce risk of osteoporosis, which is especially dangerous for someone with MS. Exercise also helps preserve our sense of balance and improves mood.

Because of all these benefits, researchers studied an approach to get people with MS to be more physically active. I’m going to try some of the tips listed and be determined to get into a regular exercise program. Explore different ways that you can make these ideas work for you, too.

Click here to continue reading from about.com


Amazing Multiple Sclerosis Research for 2010

Billions of dollars are being used to jump start the year 2010's research for multiple sclerosis and it will be interesting to watch it all unfold.

MS was first diagnosed in 1849 even though the earliest known description with possible MS is dated in fourteenth century Holland.* and is hard to research for many reasons; three of those include the cause of the disease, there being no single pattern to follow as there are different categories of it, and the course of the MS being unpredictable. Since it is difficult to scientifically pinpoint, because of those reasons listed above among others, extensive placebo-controlled clinical trials are required.

We are finding more scientists than ever researching this disease and have also seen more money being allocated for it's study than ever before, even more than for cancer at this time. What follows is a just a small list of potentially high-impact studies having already being done with results slated towards being published in 2010 or fresh money being slated for specific new studies starting next year:

  • The United States National MS Society has issued a statement for international grant applications to examine CCSVI (see previous article) on disease progress and are working with MS Societies around the globe as well. An international panel is going to be convened for a joint review of grant applications to find a strategic approach towards funding the best research for CCSVI.
  • Charcot Research Fund 2010 -- Most clinical trials running right now are working towards replacing injections with a pill form of the drugs for comfort. They are reporting that most are in Phase 2 studies where the most promising molecules are selected ( fumaric acid, cladribine, and laquinmod ) to use in Phase 3 studies. Fingolimod Phase 2 results were published previously and were given the green-light for Phase 3 which is already underway.
  • CLICK HERE to continue reading from The Examiner.com

Tuesday, December 29, 2009

MS related: Stuart's first (Tysabri) Infusion Update - Almost two full weeks later

Stuart's first (Tysabri) Infusion Update - Almost two full weeks later - today is December 29, 2009

This is being written after the first two blog posts of my first infusion (links found below) - Read the Comments that followed each of my writings from others who knew just how to answer me.

What was I to expect? Well I really at first, expected nothing and just hoped for better. Better than how I was feeling.
After my ZING of energy began the evening after the day of the infusion, I was filled with incredible energy and the need ( not just the want) to do things.
To get things started and accomplished.
Nothing was holding me back.
There was no fatigue.

I was truly inspired. Had not felt this zest "to do" in quite some time.
Even my cane has remained in the car and although had pain while walking, I did not need it for balance (which was my biggest reason for the need of a cane).

Two days ago, I remembered that I had MS. My balance again became an issue. Maybe I had over-done things this last week plus? I mentioned to my wife that "It's B-a-c-k-k-k". She asked what, and I had to explain and then also mentioned that I guess that this is the reason I was told that I really would not notice a difference with the new medication until after the 2nd or third infusion

Then Yesterday happened (yes of course I know it happened, there ARE usually Yesterdays). I awoke in the a.m., not wanting to be awakened. Know what I mean? That freaking Fatigue, even upon awakening. I had no mind for much of the early morning. Could not reason, comprehend or get a clear mind to tackle things such as reading and answering emails, paying bills, figuring-out which from my list of things, I would be able to do most efficiently and correctly.

I had my usual morning cup of coffee, then another and another and another. Just trying to get (and find) the energy to do things. I wanted to begin dismantling some of the holiday decorations that I had the blast of energy just a few days before my wife's holiday to finally put up and yet, when I went outside to begin separating I just looked at it and said, it'll have to await another day. No mood for figuring "how to take things apart" and just not in the mood to do anything physical. And so, yesterday seemed to drag and each task took much longer to do, than a week ago.

Today I awakened much the same as yesterday, only today, after taking the dogs out in this unseasonably chilly weather for South Florida, I crawled back into bed for another 30 minutes. I just finished my usual early morning cup of coffee and am now getting ready to make another.

Yes, let me take a break from writing as my vision today is much like yesterday Hazy and a bit blurry.
What's the deal with this?
And what's with this pounding headache I have had for the last two plus days?
Oh - I guess maybe my migraines are back too.....

So now that I have another cup of coffee in front of me on this chilly morning. Ah, this warm cup in my hands feels good. Why the heck I am wearing shorts and a polo shirt is beyond me? Dang, it's chilly. My eyeballs seem to be dancing across the monitor. Bouncing while trying to see where I left off..

With Fatigue evidently back, My balance is off, my thinking is off and my desire to do things is waning.
I know that my cane will feel like it has found it's companion (me) again as it will know the need I have for it.
Yes, My Cane will feel appreciated (LOL).

I feel like a drug addict must feel when the need for more.
I feel the need for another "hit". The "hit" being an Infusion. If this is what is needed for me to get that "Zing" back...
Is this what I have heard from others? That after three weeks, they are ready for their next dosage?
If yes, boy am I in trouble. I have to wait another 13 days til my next infusion.

Some of you might be wondering how he can write what was just written here, feeling as he says he's feeling?
Remember that:
1) I am a writer (this should have been a calling for me).
2) writing for me comes from the heart. My Heart. It's what I want others to know not particularly of me, but of the situation that I and thousands of others are living.
3) It's a way to get others to write, to respond and for their responses to be learned by others. All of this getting back to what I aim to do in providing information for others to learn-from, with regards to their MS or any other disease or illness. It's my mission to empower others.

And so, this I will again need to say, that I want to see your responses, comments and whatever else.
BUT, I need your responses to be left at this blog posting and not necessarily on FaceBook or Twitter as not everybody Tweets or Friends others.

Either you are reading this blog posting at the blog in which case just click the link shown below to comment or if reading this on Facebook, then please click this link to get to the blog, then find this posting by Title (using blog search or just scrolling) to leave your comments.

Those using this same medication, may want to let me know if anything I mentioned is justifiable or if I am just insane... And if you are new to this series of mine, then you may want to get caught-up by first reading from the beginning by clicking-on and reading from the two links found below. Read the comments left at each posting...

My wishes for each of you to NOT just have a healthy New Year, but to have a Healthy New DECADE!!

Best Regards,

Stuart Schlossman-RRMS

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