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Friday, February 6, 2015

Ever Feel that tingling shock running down your body when you lower your head?

This is called:  Lhermitte’s Sign: 
What Is It, and How Do You Treat It?

Lhermitte’s sign, also called Lhermitte’s phenomenon or barber chair sign, is often one of the first symptoms mentioned by people newly diagnosed with multiple sclerosis (MS). It was first recognized in 1924 by neurologist and neuropsychiatrist Jacques Jean Lhermitte.

What you’re feeling
Lhermitte’s sign is described as an “electric shock” sensation that passes down the back into the arms and legs when you move or flex the neck. It can be startling and painful, but it’s not life-threatening. The sensation usually lasts only a few seconds but can be intense. With time or with treatment, some people stop experiencing Lhermitte’s sign.

What’s really going on?
Within your body’s central nervous system, the immune system begins to attack the myelin, a fatty substance that normally protects nerve endings. Without myelin, scar tissue forms and begins to block nerve messages, causing a range of symptoms including Lhermitte’s sign.

What should you do?
MS is not the only condition that can cause Lhermitte’s sign. People with other disorders involving the cervical spinal cord, as well as people with severe vitamin B12 deficiencies, can experience it, too. Your doctor will want to rule out all the possibilities to find the best treatment for you.

Treatment and therapy

Click here to continue reading




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Thursday, February 5, 2015

If it Ain’t Broke, Don’t Fix it

If it Ain’t Broke, Don’t Fix it  

(Stu's Views:  The subject is a term that I use over and over again which when I saw Ashley's story, I just had to read and then after reading this, knew that I had to share Ashley's story with you) - 


By Ashley Ringstaff—February 1, 2015
You may have heard the term before, “if it ain’t broke, don’t fix it.” Usually it’s pertaining to something in our lifestyle, home, etc. Basically meaning, if there is nothing wrong with it, don’t change it. So why am I saying this phrase now? And how does it have ANY relation o MS?
As a lot of you may have seen, heard and/or read, there have been a lot of new medications made available in recent years. For example, when I was diagnosed in August 2010, there was Avonex,BetaseronCopaxoneRebif & Tysabri. Now, there were probably some other medications used to treat multiple sclerosis, but I named the top ones that I heard about after being diagnosed. Used to be, there was just the “ABC’s” meaning AvonexBetaseron & Copaxone. Since I was diagnosed in late 2010… There have been 5 new medications approved by the FDA, but there have also been changes in administration of an existing medication, dosing changes, etc.
As some of you may know, I’ve tried a handful of MS medications… but I wanted to make it clear as to why I have had multiple changes in my disease modifying therapy. So let me just say that, I started off on Avonex… and I did well on it, but it wasn’t slowing my progression in any way, so I went to Tysabri. This was in 2011… and the JC Virus Index testing was not available at that time. So when I came up JC Virus positive on my routine labs, I decided to try a different medication, where I was more comfortable with the risks, side effects etc. (For more info about the JC Virus and PML, click here. To view more info about Tysabri, click here.)
I then went to Copaxone… and at that time, the only available dosing for Copaxone was once-a-day injections. I did well on Copaxone as well, but a few months into the treatment, I developed a reaction to it, and had to discontinue Copaxone. I decided to just wait for Tecfidera to be approved, because it was going to be happening very soon, and I didn’t want to have to worry about doing a “clean-out”… flushing my symptoms of drugs, which is basically waiting a period of time to make sure the medication is out of your system.
So I went on Tecfidera once it was FINALLY approved… and I did very well on it. I didn’t have severe side effects. The side effects I did have, pretty much went away after the first month of taking it. I was finally very happy about the medication I was on, with little to no side-effects once my body adjusted and then studies had shown that it did really well in slowing MS progression. (Article Post: Taking Tecfidera)
I went in for my routine MRI, and it seemed that Tecfidera wasn’t working for me the way it should have… so I made the decision to return to Tysabri, seeing as they now had the JC Virus Index Testing, which monitors your JC Virus ‘level’ that correlates to the chances in getting PML while on Tysabri.
So, as you can see from my in-depth explanation, every time that I made a medication change, there was something wrong with how I responded to the medication or the risks (at the time) were greater than the benefits, for me personally
But my point here is, I didn’t change medications at any time, just because there was something new out there. While it’s exciting that there are more and more medication options becoming available to those with MS, there isn’t just ONE medication that works for ALL of those with Multiple Sclerosis.(Read more about my article describing how no two patients are the same, MS Snowflake.)
As you may know, I attend major MS conferences with MSWorld and Dr. Daniel Kantor, and I get to speak with numerous medical professionals while I’m attending these conferences. And it seems to me that most of them believe that if there is nothing wrong with the medication the patient is currently taking and it is managing their disease positively, then there shouldn’t be a reason to change. Now, when I talked to some neurologists that were from the South like myself they pretty much said or directly quoted, “If it ain’t broke, don’t fix it.”
The way I see it, if you have something that is keeping your MS progression under control, is it worth the risk to change to something else, just because? I know that the answer is different for everyone. A lot of people want to go to an oral medication because they’re tired of injections, or something like that. I can completely understand that.
But if you’re comfortable on the medication you are taking to help slow your MS progression and have no problems with the administration of it, why would you want to change? It has been said by numerous medical professionals that they have not found ONE specific MS disease modifying therapy, that works with the whole entire Multiple Sclerosis Population.
If you aren’t on any medication for your MS, I completely understand. Some people do well managing their MS without medications, others don’t have any medication options left unfortunately. But for me, personally, I’ve had a “Drug Holiday” as I like to call it, and it wasn’t good for me AT ALL.
So why am I rambling on about this? Because I know that a lot of us living with MS reach out to others that are living with MS for opinions, insight, etc. So I want everyone to keep in mind that, just because one person you speak to had a horrible time with one certain medication, doesn’t mean that YOU will. We are all different; MS affects each and every one of us differently. Yes, we have a lot in common symptom wise, but our MRIs are not all identical.
Speaking of symptoms, I feel the same way about symptomatic treatment… “If it ain’t broke, don’t fix it.”
I understand that we all want to discuss certain medications, treatment options, etc. with one another and that’s amazing. We need to be there for each other. But I’m not going to make a decision about my MS care based on another MS patient’s experience. I will, however, keep their opinion in mind when I discuss things with my neurologist, nurse, etc.
I know that not everyone will have the same viewpoint as I do about this, and that’s okay. We are each our own person and we each have our own circumstances surrounding the decisions we make in regards to our plan to battle MS.
Anyways, I wish everyone the best! Until next time…
xoxo
Ashley Ringstaff  
-- Article source found here
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Wednesday, February 4, 2015

News worth knowing: A Stem Cell Scam Unravels…

By Marc Stecker-Wheelchair Kamikaze—January 30, 2015
As many MS patients are aware, stem cells represent one of the great hopes for vanquishing multiple sclerosis by way of their tantalizing potential for repairing damaged brain and spinal cord tissues, regulating aberrant immune responses, and ultimately restoring patients to good health. Research into the use of stem cells to treat a wide variety of diseases is increasing seemingly by the day, and scientists are beginning to unlock the tremendous promise of these emerging therapies. The therapeutic use of stem cells may dramatically transform the medical landscape in the coming years, and this prospect provides much-needed hope to patients desperately searching for answers.
Sadly, where there are significant populations of desperate people, there are almost always human sharks ready, willing, and able to take advantage of them. Thus, it seems, we have the story of Regenetek, a Canadian company that arranged for patients to travel to India for an experimental stem cell treatment under the guise of a certified medical clinical trial. Over the last several weeks, the Canadian press has revealed that the man behind Regenetek, Mr. Doug Broeska, allegedly misrepresented his credentials, the qualifications and abilities of his company to conduct a valid medical clinical study, and cajoled, bullied, and berated patients who dared question his authority or the veracity of his claims (click here). It must be said that while some of the patients who underwent the Regenetek’s stem cell therapy in India received no benefit, others have reported good results, and that’s where this story gets tricky. Though Regenetek and Doug Broeska may turn out to be complete shams, the stem cell therapy the company was hawking may have value, at least according to patients who claim to have seen benefit from it (click here). 
I first became aware of Regenetek when Mr. Broeska invited me via email to join Regenetek’s private Facebook group, where patients discussed various aspects of the company’s stem cell treatment and their experiences with it. At that time, Broeska was known as Dr. Doug Broeska, or “Dr. Doug”, claiming that he was a “PhD medical researcher”. That rather generic designation set off a few red flags in my mind, especially after a quick Google search revealed little other than the fact that Mr. Broeska had been involved in some sort of electronic medical records company before taking an apparently rather sudden interest in stem cells.
Further red flags sprung up when, after spending a little time on his Facebook page, I saw that Broeska was posting articles he had written on various stem cell related subjects that contained errors and misinformation. These articles were also posted on Regenetek’s website and blog. One article in particular raised my cackles, a piece about HSCT – a type of stem cell therapy in which a patient’s immune system is ablated using chemotherapy drugs and then rebooted through the use of bone marrow derived stem cells, which clinical trials are proving to be quite effective in properly selected patients – that was so ill-conceived that I felt compelled to call out the myriad inaccuracies in the piece. After a bit of back-and-forth, Broeska removed the article, but his seeming intentional misrepresentations of fact set off alarm bells of doubt in me about his credibility.
As I’ve mentioned in the past, I’m not a huge fan of Facebook, and after the above incident I didn’t spend much time visiting the Regenetek page. I was left with questions about the clinical trial the company was supposedly conducting, since it seemed that the only follow-up being done after patients returned from India were e-mailed anecdotal patient self-reports of how they were doing post treatment (no MRIs, neurologic testing, or other objective measures required), as well as doubts about many of the statements and claims made by “Dr. Doug”, but I’d seen how anybody raising such concerns on the site were met with hostility and frankly wanted no part of it. I remained in email contact with one of the members of the group, who occasionally asked for my opinion on stem cell related topics and told me about several disgruntled patients, but other than that I didn’t give Regenetek or Mr. Broeska much thought at all.
A few weeks ago I was alerted to the fact that the Regenetek Facebook site and related webpages had been taken down, along with Doug Broeska’s business profiles on the LinkedIn website. Soon after, an article appeared in the Winnipeg Free Press detailing Mr. Broeska’s alleged web of deceit (click here). Among the article’s findings were that “Dr. Doug’s” claims of earning a PhD at the University of Manitoba could not be confirmed (the University had no record of his graduating), and that another of his claimed degrees came from an institution called Brightland University, which apparently doesn’t actually exist, and is only part of the University Degree Program, an online degree mill that operates dozens of sham institutions. Furthermore, Broeska had claimed that he was a member of the International Cellular Medicine Society (click here), an international stem cell research oversight organization, but the executive director of the ICMS could find no evidence of Broeska’s membership. It had also been claimed that Regenetek’s clinical trial was being run under the direction of several Institutional Review Boards (IRB’s), which are governing bodies that ensure the validity of medical research efforts. No record of any legitimate IRB approvals could be found, and one of the organizations cited by Broeska as overseeing the Regenetek clinical trial was found to be headed up by one of his business partners.
Additionally, Broeska often boasted that Regenetek was a not-for-profit corporation, and that the company actually helped subsidize the cost of patients’ treatments, for which the patients themselves paid up to $45,000 US. While Regenetek is indeed registered with Canada as a not-for-profit entity, most of the patients sent for stem cell treatment in India paid their fees to another Broeska owned company, CliniCard, which is a for-profit corporation (click here). Allegations have also been made that Regenetek paid patients that had gone through their stem cell protocol to recruit other patients, and to post testimonials and videos on Facebook and YouTube.
Perhaps worse than all of Broeska’s alleged falsehoods and financial sleight-of-hand were his practices involving many of the patients with whom he dealt (click here and here). According to reports, patients were threatened with being kicked out of the Regenetek clinical trial if they questioned any of the claims or methodologies used by Broeska after they returned from India. Broeska repeatedly stated that virtually all patients undergoing the treatment protocol in India saw “curative effects”, and that many had “returned to complete health without symptoms” (click here). Patients who reported little or no benefit from the treatment were accused of working for competitors, or otherwise having ulterior motives, and were booted out of the Regenetek study. Upon returning home, most patients received little if any follow-up, despite their supposedly enrollment in an ongoing clinical trial. Broeska was known to spend hours emailing and even Skypeing with prospective clients, befriending them in an effort to convince them of the validity of his claims and of his expertise in stem cell research, and ultimately to sign them up for treatment in India, to the tune of tens of thousands of dollars.
Regenetek partnered with an Indian firm called Genesis, whose Chief Operating Officer is an IT professional named Surjo Banerjee, that oversaw the medical procedures performed at a hospital in Pune, India. As previously stated, patients were charged up to $45,000 US for treatment (not including travel expenses), which consisted of CCSVI angioplasty combined with an infusion of stem cells derived from the patient’s bone marrow, in addition to intravenous and intrathecal (spinal) infusions of these same autologous mesenchymal stem cells. While in India, patients also underwent roughly 2 hours of physical therapy each day, purportedly to help the stem cells circulate to where they were needed. Perhaps not coincidentally, studies have shown that periods of intense physical therapy alone can markedly improved the functionality of many MS patienes, although the benefits fade after physical therapy is stopped (click here). Many of the claims and methodology used in what Regenetek dubbed the CTP (Combination Treatment Protocol) have been challenged by doctors familiar with stem cell technology (click here).
Due to the fact that so little actual follow-up was done on the approximately 70 patients who traveled to India for treatment, it’s impossible to quantify the actual effects of the treatment; suffice it to say that of the relatively few patients who have been heard from there are some who say they have seen sometimes dramatic improvement, and others who claim the CTP treatment to be a total failure. It’s impossible to objectively judge the veracity of subjective anecdotal patient reports, as any number of factors could contribute to the self-reported success or failure of any experimental medical procedure.
I will say by all accounts it does appear that Regenetek patients did receive some sort of stem cell therapy from licensed doctors while in India, effective or not; the scam that occurred lies mostly in the manner by which patients were recruited and then handled after they returned home, and in the financial shenanigans allegedly undertaken by Mr. Broeska and his colleagues. Unfortunately, because of the lack of any rigorous follow-up whatsoever, the actual effects of the treatment on the 70 or so patients who underwent the stem cell therapy will never be known, at least in any scientifically valid fashion. This is a real shame, for who knows what valuable lessons might have been learned if these patients had been properly assessed post treatment by qualified medical professionals?
As of this writing, the Indian company Genesis, which worked hand-in-hand with Regenetek until news of this scandal broke, is planning to continue offering stem cell treatments in India (at a cost of $16,050 US, as compared to the $45,000 charged by Regenetek), and even has plans to open a clinic in Trinidad despite the questions surrounding its offerings (click here). Patients who paid deposits to Regenetek but have not yet gone to India are demanding refunds, but thus far have had very little success getting any response. Posts have appeared on Facebook pages on which this matter has been discussed stating that representatives from Genesis or Regenetek will not be answering any inquiries posed on those sites. A Canadian doctor who worked closely with Regenetek has claimed she was “scammed” (click here). It seems that most of the players involved are now in serious “cover your a**” mode, and investigations into Regenetek by the Royal Canadian Mounted Police and other Canadian government agencies are now underway.
If any or all of the allegations made about Regenetek hold true, I hope all who read this will see this story as a cautionary tale about the dangers lurking in some corners of the world of alternative medicine. Distressingly, there are living, breathing human beings out there who somehow feel no guilt in taking advantage of desperate people with horrible illnesses. Back in high school I took an art appreciation class, most of whose content I don’t remember. I do remember, though, something that my art teacher, Mr. Rosen, once said: “Be careful, there’s human garbage out there…” Don’t ask me what that quote had to do with art appreciation, but it sure was memorable, and quite apropos of charlatans who seek to profit from the desperation of sick people.
This article was originally published on Marc’s website on 1/23/15 and is being featured on MultipleSclerosis.net with his permission.
Profile photo of Marc Stecker-Wheelchair Kamikaze
 
Marc lives in New York City with his lovely & wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, he now requires a wheelchair to get around the city. Marc likes to drive his wheelchair at full speed, thus the moniker "Wheelchair Kamikaze."
SOURCE for the above article is found here


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Tuesday, February 3, 2015

Helicobacter Pylori Infection May Help Protect Against Multiple Sclerosis in Females

shutterstock_176963594February 2, 2015
A new study on the association between Helicobacter pylori and multiple sclerosis (MS) entitled “Helicobacter pylori infection as a protective factor against multiple sclerosis risk in females” was published in the Journal of Neurology, Neurosurgery & Psychiatry by Marzena J. Fabis Pedrini from the Centre for Neuromuscular and Neurological Disorders at the QEII Medical Centre in Australia, along with colleagues.
Helicobacter pylori (H. pylori) is a gram-negative bacterium that chronically infects more than 50% of the human population. This infection increases the probability of gastric diseases including peptic ulcers and gastric cancer. H. pylori infection has been associated with the development and progression of neurological diseases, such as Parkinson, Alzheimer’s, Guillain-Barré syndrome, multiple sclerosis, and ischemic stroke, mainly due to the induction of systemic inflammation, molecular mimicry, and interference with the absorption of drugs. Studies have shown a relationship between H. pylori and multiple sclerosis (MS), but with conflicting findings.
In this study, the research team investigated the impact of H. pylori infection in multiple sclerosis (MS). The researchers included in the study 550 patients with MS and 299 controls with similar age and gender. They evaluated the clinical and demographic parameters of the individuals and used an enzyme immunoassay to detect the presence of specific IgG antibodies against H. pylori in the serum sample of patients with MS and controls.
CONTINUE READING



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Laughter Yoga for Multiple Sclerosis

2015-02-02 12:13

Laughter yoga was developed by Madan Kataria, MD, in 1995, as a way to help spread the word about the value of laughter as medicine. Both in his practice and from his research, Dr. Kataria found that laughter, whether it is fake or real, provides important health benefits.
Having multiple sclerosis is no laughing matter. However, that does not mean laughter does not have a place in dealing with MS. In fact, laughter yoga for multiple sclerosis may be just what the doctor ordered.
One great thing about fake laughter is that is easily transforms into the real thing. Laughter can be contagious, and that is easily evident in laughter yoga sessions.
First let me explain that laughter yoga does not involve getting into various poses. You can do laughter yoga while standing or sitting, and it is completely wheelchair friendly.
Instead of poses, laughter yoga involves four basic components: clapping (using your full hands, which stimulates acupuncture points), breathing (basic breathing exercises), childlike play, and laughter exercises. Deep breathing and short meditations also may be part of the sessions.

WATCH this Presentation and see if you giggle too:





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Monday, February 2, 2015

MSF Program Helps You Keep Your Cool


Many people with MS experience weakness, fatigue, visual disturbances, and other symptoms when they become overheated. Keeping your body cool allows you to reclaim the ability to spend time outdoors during the warmer months and helps you enjoy activities like barbeques and baseball games.


The MSF Cooling Program offers a variety of free items – including bandanas, neckties, hats, wristbands, and two types of cooling vests – to help you gain relief from heat-induced symptoms and maintain your active lifestyle. 

Applications are accepted from Feb. 1 to June 1.
The Program Services department can make applications available via email, fax, or mail. 
Call 888-673-6287 or email support@msfocus.org.







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Acorda Announces Safety and Tolerability Data from First Clinical Trial of Remyelinating Antibody in Multiple Sclerosis

02/02/2015
Phase 1 trial results support advancing development of rHIgM22

ARDSLEY, N.Y.--(BUSINESS WIRE)-- Acorda Therapeutics, Inc. (Nasdaq:ACOR) today announced safety and tolerability data from a Phase 1 clinical trial of rHIgM22, a remyelinating antibody being studied for the treatment of multiple sclerosis (MS). The trial, which followed participants for up to six months after receiving a single dose of rHIgM22, found no dose-limiting toxicities at any of the five dose levels studied. Based on these data, the Company intends to advance clinical development of rHIgM22.
“We’re encouraged by the outcome of this trial, which showed that rHIgM22 was well-tolerated at all of the dose levels we studied,” said Anthony Caggiano, M.D., Ph.D., Acorda’s Senior Vice President of Research and Development. “We are currently developing the protocol for our next Phase 1 clinical trial of rHIgM22. The data from this study will help inform the design of the next trial, which will enroll people with MS who are experiencing an active relapse.”
This was a multi-center, double-blind, randomized, placebo-controlled study designed to evaluate safety, tolerability, pharmacokinetics, and immunogenicity of a single dose of rHIgM22 in participants with any type of MS who were clinically stable for at least three months. All participants remained on their existing MS treatment regimens, including disease-modifying therapies.
The first part of the study included five cohorts, with each cohort receiving a higher dose of rHIgM22 than the previous one. Each cohort consisted of 10 participants (eight receiving drug, two receiving placebo), who were followed for three months after receiving a single dose of study medication. In the second part of the study, 21 treatment-naïve participants were randomized to receive placebo or one of the two highest doses of rHIgM22 from the first part of the study. These participants were followed for six months to assess safety and tolerability. The second part of the study also included several exploratory clinical, imaging and biomarker measures, which are still being analyzed. The study was not powered to determine statistical significance on these measures.

Additional details from the trial will be presented at future medical meetings.

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