Please visit our MS learning channel on Youtube, which provides hundreds of topics from our education programs, that were video-recorded and archived here: www.youtube.com/msviewsandnews

joomla ecommerce template -- Scroll left side of this blog for needed resources. Also, use our 'search by topic' tool, to find specific information.

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.

=================

Thursday, April 3, 2008

My Hiatus from my MS Medication - The Pros and Cons - a valuable lesson learned....


My Hiatus from my MS Medication - The Pros and Cons
Why I did it, and how it affected me...
At first I thought I deserved a break from using it. After all, it had been longer than a year (thankfully) since having a bad exacerbation. But most importantly (at the time that I began the hiatus) was that I was tired of my injection sites looking as they had been. Many of you know, the puffy and bruised looking, tender, or hardened skin reaction that can often be found from those doing sub-cutaneous injections.
How often do you, my ms peers, hear or read or know first hand of these skin reactions?
How often do you hear from a peer, who (like me) is now admitting of the temporary halt of his or her medication?
How often do you read or see this admittance in writing?

I do hope that at least some of you, will reply to this story by leaving your comments for me and others to read...

I know that my doctor will not be happy to hear that I stopped taking my medication when I did. He might be hearing of it first-hand, as I know that he reads my e-Newsletters and might even now be reading what I post to this blog.

I know that my own family will not be happy to read what I did. My wife has known since the beginning and has been on my a-- about it...

Okay, aside from the skin reaction ( which really isn't a big deal), I was often depressed. Yes, of course I know that this too is an MS Symptom but it can become worse from the interferon too. And aside from the skin reactions and the depression, I was getting severe skeletal pains.
Yes this too, could be just the MS "or" it also could be from the interferon.

I don't know if you realize, but these medications have side effects.. Sometimes, very serious and consequential side effects. Of course I easily gelled past the initial side effects of using an interferon. You know, the flu-like symptoms.. That was a breeze and that was many years ago. After all, I had been using this medication since April 2002.

Well let's get down to what happened. Somewhere near to mid February (2008) I decided (foolishly) to stop taking my injection. It was only supposed to be for a week or two. Well, after two weeks, I was feeling GREAT. Yes, I mean REALLY GREAT.. No depression, no body aches, and the bruising on my belly and legs began dissipating. I asked myself, "Self, maybe you don't need to go back onto the medication so soon, You've been feeling great".

My energy actually increased. I am sure the cooler temperatures, here in South Florida, helped this to occur. Cooler temps causing less fatigue. But in either case, I was feeling good. So, two weeks stretched to three and then three stretched to four, without taking my MS Medication.

I didn't even need to take Tylenol as much as I had been taking. No pain, no tingling, no headaches, and best of all NO depression.. when someone asked how I was doing, I noticed how often I responded that I FEEL GREAT, or Fabulous or other similar words.

I was able to think clearly and positively. I was getting so many things accomplished that I was not able to do prior to the middle of February. I even began playing golf again and got in I think 5 games during those weeks. Okay so yes, I played crappy, but I PLAYED and it felt good to be able to get on the golf course and do what I so often used to do. Play Golf. Of course those that I play with, knew how I once played and no why I now play, well just just say, not so good.
But again - I was able to ride in the cart, get to my ball and swing..... I was able to walk up to the greens and 2-putt ( for those that understand this)..

Then week five came along and BLAM... !!!!!!!
It first began as that annoying buzzing feeling, like being connected to a wall outlet from the top of my neck down to my feet.. Okay, I thought, I can live with this... Then within days, I began forgetting things again. Like getting lathered-up in the shower and leaving the stall before rinsing.. Or getting dressed while also putting toothpaste on the toothbrush but forgetting to put it into my mouth. Or putting my sneakers on without my socks.. I never did that before, why now......

Then just a couple of days later (week six), BLAM AGAIN !!!
Something major now has returned. My Vertigo. Sure I had had problems with vertigo on and off over the years but not to the degree that this was.. This was how I used to get it 5 and 6 years ago. Where the inside of my head felt like a wet towel that was being wrung-out, swishing side to side and then the whole world began to spin.. I was driving when this first happened, just a couple of weeks ago but fortunately ( I have no clue how), but was able to pull off into the shoulder and wait for the effects to subside. Then drove 40 MPH on a 65MPH highway to get home.. Ooh that was weird, I thought. The while returning home just a couple of days later with my wife next to me int he car, I swerved to get onto the swale alongside a side road near to my home. She asked what the problem was and I had to tell her what happened just a few nights previously, and then that it was happening again at that instant.

This time though, not only did I feel like I was being pulled inside out and left to right, but the lines on the roadway began to criss-cross over each other.

The very next day, in the morning, I was in the backyard with my dogs and the world started spinning. As in years past, I had to fall to the ground and grab the grass to hold on for a space flight.. In the past it happened in my home, in restaurants and other places when I had to fall to the floor and just try to HOLD onto the floor, the carpeting, whatever!!!! Just trying to remain in one position. When it's happened in the past, I had to be covered in ice, to cool my body and kill whatever inflammation ... Take some pills and try relax.. That was the only way to get out of it......

In addition to what I just mentioned, quickly returning to me were symptoms that had happened to me in the past, just never all at once:
Slurring, blurriness, double vision, foot drop (tripping over my own feet),the forgetfulness, inability to concentrate or make decisions, the headaches have resumed full blast and the pain on the right side of my body. Leg Pains so severe I could barely walk... And I developed a fear of getting behind the wheel of my car, not wanting to drive too far, or on roadways that are high speed.
And most scary, is not knowing where I am, when driving only across town, or as I am heading-out of my own neighborhood...

Quite obviously I began relapsing (exacerbating).. Of course like I mentioned above, my doctor has not known until maybe now, what I did to myself. He probably would have wanted me to immediately resume my medication, which I obviously already re-began (last night having had my third injection since re-commencement) and maybe take steroids which I surely do not want to do after working my tail-off on losing (thus far) 30 Lbs since last August.

So for the last few days,I have stayed close to home, have rested much and am trying to get myself back to where I was (medicinally), prior to mid-February.

Lesson learned: the side effects of the medication are far less damaging than whatever damage I just inflicted upon myself. The Medication's side effects are far less destructive than what this disease (MS) can do to us.

Bottom Line : Never again will I do, what I just did, no matter how good it might feel for the short interruption of taking my medication.

I wrote this so that you can have advanced warning of the danger to stopping your medication. If you are experiencing problems with your medication, immediately speak with your doctor or MS nurse.

Now that you have read about My Hiatus from my MS Medication, you will know that the CON'S (Negatives) of stopping, were far more detrimental (damaging) that the short lived Pro's (benefits). I now look forward to my next injection.

Please leave your comments at will !!!!!

Thank you.

Sincerely,

Stuart

p.s. - Remember that the meds do not halt the disease. They only thwart further progression.
By not taking the medication, it's obvious that the decline only continues. Therefore you
(and I ) must not allow the MonSter to have it's way.

p.s.s - see the follow-up stories to this hiatus

.


When the Disease Eludes a Diagnosis ..

This NY Times article was provided to me by Sandi - in Ohio
Published: March 25, 2008

Lucy, one of my longtime patients, has a neurological ailment she believes I have been unable to adequately diagnose.


Jessica Romberg

Although I hope to make further progress on her case, I have also told her that there may never be a definitive answer. Not surprisingly, she is feeling pretty frustrated with me.

Why do doctors and patients often approach the diagnosis of disease so differently?

Part of the answer lies in the concept of triage — the notion, originated in wartime, of caring for the sickest and most salvageable patients first. Once they were saved, attention could be turned to less drastic cases.

A similar strategy has evolved in emergency rooms, where physicians are trained to “rule in” or “rule out” severe conditions. Thus, doctors immediately consider heart attacks or pulmonary embolisms for patients with chest pain, and intestinal rupture for those with abdominal pain.

But what happens when these conditions are ruled out? In such cases, doctors proceed to search for less dire (and, it must be said, more mundane) diagnoses. The trouble is that at this stage, some physicians, busy with other patients and duties, lose interest.

For example, many patients with chest pain carry a diagnosis of costochondritis (inflammation of the chest wall bones) or gastroesophageal reflux (regurgitation of stomach acid into the esophagus).

These are real conditions. But they tend to generate little interest from many physicians, who may refer to them as “wastebasket diagnoses,” offered when nothing more serious has turned up.

The frustration of patients who believe that the medical profession takes these types of ailments too lightly has led groups of them to form alliances to publicize their illnesses. Foremost among them are fibromyalgia, a syndrome involving muscular and other pains, and chronic fatigue syndrome, which has recently been given increased credibility by the Centers for Disease Control and Prevention.

Part of the problem with these conditions is that existing treatments are not nearly as effective as those for, say, heart attacks and pneumonia. As a result, doctors may grow irritated when patients continually complain of symptoms that cannot be “cured.”

Patients’ frustration may rise even more when their conditions are especially obscure. I once had a patient who complained of persistent drenching sweats that forced her to change her bedclothes several times a night.

Upon learning of this problem, I first went into triage mode, ruling out possible dangerous causes, including tuberculosis, a thyroid abnormality and rare tumors that release hormones. I referred her to a gynecologist on the chance that she was getting hot flashes decades after her menopause.

When all the tests were negative, my patient was understandably upset, even angry. “No doctor that I have spoken to has been able to tell me what it is,” she said, as I remember. She even called a doctor on a local radio show for his opinion.

I recalled this story when I learned recently that my longtime patient Lucy’s new neurologist was questioning whether she had multiple sclerosis, a diagnosis she has carried for more than 25 years. Since I have known her, Lucy has had painful and weak legs that necessitate a walker.

Rather than simply corroborating her existing diagnosis, this doctor had thought outside the box, noting that Lucy’s relatively stable condition — and her lack of brain lesions on an M.R.I., a test not available at the time of her initial diagnosis — warranted a new perspective.

At first, Lucy was excited too. After all, being told you may not have a serious disease like multiple sclerosis is surely good news.

But while the neurologist had correctly questioned the diagnosis, she had a harder time finding a new one. Lucy became discouraged. “I want to know,” she told me. “I point-blank asked the neurologist, ‘What is it?’ And the only answer she can give me is: ‘I don’t know. I’m not sure.’ ”

Eventually, the neurology team decided that Lucy had an atypical form of multiple sclerosis, one that caused unusual neurological symptoms and was present in the spinal cord but not the brain. Yet the doctors admitted that this diagnosis generated more questions than answers about Lucy’s prognosis and her future treatment.

While trying to be as sympathetic as possible, I find myself reminding Lucy of the limits of certainty in medicine. Despite enormous advances in technology, some diagnoses may remain elusive. I also told her that it was highly unlikely her doctors missed diagnosing a disease that could have been successfully treated. But she remains convinced that she deserves to know exactly what she has.

So we will continue to search.

Barron H. Lerner teaches medicine and public health at the Columbia University Medical Center.

No More Needles? - Info on the soon coming Oral Drugs for MS

The Multiple Sclerosis Association of King County

Laurie Long 11/14/07

There are currently six drugs available to slow the progression of MS (Avonex, Betaseron, Copaxone, Rebif, Novantrone and Tysabri). But whether you get it once a day or once a week, subcutaneous or intramuscular, you’re facing the needle over and over again. Effective oral drugs for MS have been a sought-after solution for a long time. Now, multiple drug companies are racing each other and the clock to get US Food and Drug Administration (FDA) approval for their particular offerings.

Most of the drugs below are currently in Phase III trials (the last trial phase before applying for FDA approval), which generally last 2-3 years. Time is also required to collate the data, apply to the FDA for new drug approval, and receive that approval. If it can meet the requirements, a drug can receive Priority Review, which speeds up the process of FDA review.

The big questions now are: what are these drugs, how do they work, how effective are they, what are their potential side effects and when will they gain FDA approval and hit the market? Let’s take a look…

» Read More




Wednesday, April 2, 2008

What Are Neutralizing Antibodies, Anyway?

From the about.com-MS Pages
You will find the answer to the Question: What Are Neutralizing Antibodies, Anyway?

Neutalizing Antibodies and Disease-Modifying Therapies
for Multiple Sclerosis


How Concerned Should You Be?
Neutralizing antibodies (NAbs) are antibodies produced by the body, which react with a foreign agent and destroys it or inhibits its effect. That is great when the “foreign agent” is a virus, and the antibodies work to fight the infection and (in some cases) make you immune to that virus. However, antibodies are not so good when your body is producing them in response to a medication and they are inhibiting the effects of this medication -– in this case an interferon-based disease-modifying therapy. The interferon-based therapies for MS include Avonex, Betaseron and Rebif.

» Read More

Tuesday, April 1, 2008

Occupational Therapy for Multiple Sclerosis (MS)

By Susan Dorne - Miami, Florida

People with MS are faced with numerous challenges that may affect the things they want and need to do. Often limitations impede the ability to take care of basic needs at home, at work and within the community. Simple everyday tasks can turn into daily frustration. One of the best approaches to help alleviate these challenges is through the intervention of Occupational Therapy.

I am an occupational therapist with 20 years experience and I have had MS for 12 years. It has been essential for me to incorporate my professional skills to help me as my MS has progressed over the past several years. I can validate the impact occupational therapy can make not only as a healthcare provider but also as a person who has MS.

» Read More



Monday, March 31, 2008

About this new Blog and First General Question

I put together this new blog so that you, each of you, can leave comments without the hassles of my other site.

Let me know of conversations that you would like started and after I post them, we can go from there, with others answering and people getting to know each other...

I have something to ask of you:

How early in your life (at what earliest age) do you feel, that you could have been diagnosed with MS, knowing now, what you didn't know then?

Please Reply, by leaving a comment.


^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^

ITB TherapySM And Multiple Sclerosis

ITB TherapySM And Multiple Sclerosis

Info obtained by: Stuart Schlossman

It is reported that 34% of people with MS have spasticity that interfered with daily living.4 Managing severe spasticity with Medtronic ITB TherapySM (Intrathecal Baclofen Therapy) in people with spinal-origin spasticity, including MS:

  • Results in significant decrease in Ashworth and Spasm scores9,10,32,36
  • Results in improved function, as shown by statistically significant improvement in Functional Independence Measure scores32,33
  • Improves functional ability in bathing, dressing lower body, and transfers33
  • Demonstrated the highest satisfaction rating compared to all oral treatments4
  • May result in significantly less spasticity and fewer painful spasms compared with those treated with oral medications only4
  • Significantly reduces spasticity-related pain35,36
  • May help retain ambulatory function36

See the Clinical Evidence in Hypertonia Associated with MS section for more information on these studies and their outcomes.

The Consortium of Multiple Sclerosis Centers developed an online program, titled Evaluation and Management of Spasticity in Multiple Sclerosis, to support educational efforts on advanced spasticity in MS and available treatment options including rehabilitation, oral medication, local injections, and surgical interventions. You may view the program, at no charge, at www.mscare.org/spasticityteam.



About Medtronic ITB TherapySM

About Medtronic ITB TherapySM

Information obtained by Stuart Schlossman

Medtronic ITB TherapySM (Intrathecal Baclofen Therapy) offers a precise, targeted, adjustable treatment for the management of severe spasticity. ITB Therapy uses an implantable, programmable pump to deliver precise amounts of Lioresal® Intrathecal (baclofen injection) directly to the site of action at the spinal cord via the cerebrospinal fluid (CSF).

The precise mechanism of action of baclofen as a muscle relaxant and antispasticity agent is not fully understood. Baclofen inhibits both monosynaptic and polysynaptic reflexes at the spinal level, possibly by decreasing excitatory neurotransmitter release from primary afferent terminals, although actions at supraspinal sites may also occur and contribute to its clinical effect.7 Baclofen is a structural analog of the inhibitory neurotransmitter gamma aminobutyric acid (GABA), and may exert its effects by stimulation of the GABAB receptor subtype.7

Because ITB Therapy delivers baclofen directly to the spinal cord, it relieves spasticity with smaller amounts of medication than when taken orally. This helps minimize systemic side effects.


Anatomic figure adapted from Kroin, JS. Intrathecal drug administration: present use and future trends. Clin Pharmacokinet 1992, 22:319-326.

Introducing Lioresal Intrathecal directly into the intrathecal space permits effective CSF concentrations to be achieved with resultant plasma concentrations 100 times less than those occurring with oral administration.7



Environmental factors linked to development of autoimmune diseases

Published: Sunday, 30-Mar-2008

Medical Research News

Scientists working at the MRC National Institute for Medical Research have shown that environmental factors can influence the development of autoimmune diseases like multiple sclerosis.
A team led by Dr Brigitta Stockinger has identified a molecular mechanism that links a wide range of environmental factors to the autoimmune reactions in which immune system cells attack body tissue. The results are published online in Nature.

The research focused on a protein called the aryl hydrocarbon receptor (AhR). Activation of the AhR causes enzymes to be produced that are involved in reducing the toxic effect of a wide range of chemicals on the human body. Many of these, such as dioxin, are generated in industrial processes. The research found that stimulation of AhR by environmental factors could be involved in development of autoimmune disease.

» Read More



Environmental factors linked to development of autoimmune diseases

Published: Sunday, 30-Mar-2008

Medical Research News

Scientists working at the MRC National Institute for Medical Research have shown that environmental factors can influence the development of autoimmune diseases like multiple sclerosis.
A team led by Dr Brigitta Stockinger has identified a molecular mechanism that links a wide range of environmental factors to the autoimmune reactions in which immune system cells attack body tissue. The results are published online in Nature.

The research focused on a protein called the aryl hydrocarbon receptor (AhR). Activation of the AhR causes enzymes to be produced that are involved in reducing the toxic effect of a wide range of chemicals on the human body. Many of these, such as dioxin, are generated in industrial processes. The research found that stimulation of AhR by environmental factors could be involved in development of autoimmune disease.

» Read More

Human Fetal Stem Cell Therapy

Obtained from Jose Rivas in Miami

A medical treatment whereby Human Fetal Stem Cells are transplanted into a patient. These cellular building blocks are usually administered intravenously and subcutaneously (under the skin). It is a painless procedure, which takes place in approximately one hour, and has no negative side effects.


View this site: www.medra.com

MS Research Bulletins

Rec'd from Cherie Binns:

Ethics of Placebos in MS Clinical Trials Reassessed in New Publication
http://www.nationalmssociety.org/research/research-news/news-detail/index.aspx?nid=202



Investigators Explore MS Risk Conferred by Combination of Gene and Virus
http://www.nationalmssociety.org/research/research-news/news-detail/index.aspx?nid=203


Study: People with MS Who See Neurologists Are More Likely to Use MS Drugs
http://www.nationalmssociety.org/research/research-news/news-detail/index.aspx?nid=204




HOW YOU CAN HELP MAKE OUR NATION'S DISABILITY LAWS FAIRER FOR THOSE WITH MS

A Message from Bob - Concerning Social Security Reform
( Bob is the gentleman who has been trying to help all in need of Social Security reform) See a previous article of what he has been doing:
August 27, '07: Fighting for disability rights in America
======================================================
Hi Stuart:
Could you post this?
Bob
======================================================
Please consider sending a quick email to your senators by cutting and pasting the following:

Dear Senator ___________: (Find your senators at www.senate.gov )

During the past year, Stu's Views and M.S. Related News has helped gather over 6,000 signatures from individuals afflicted with multiple sclerosis, as well as from physicians, hospital administrators, pharmaceutical company executives, celebrities, social security administration and other federal employees, as well as major chronic illness advocacy organizations, including United Spinal, the Multiple Sclerosis Foundation and several others, to revise our nation's Social Security Disability programs to more adequately address the unique circumstances and challenges of MS victims.
www.acceleratedcure.org/petition

Recent testimony before congress included recommendations to eliminate the five-year limitation on "expedited reinstatement" for disability recipients with serious chronically disabling conditions, such as MS who desire to attempt to return to work should their condition permit. This is extremely important as no one can predict the severity and course of a disease such as MS.

Many individuals who receive SSI/SSDI would welcome the opportunity to resume working if they knew that federal assistance would resume expediently should their condition worsen in the future. Under the current program, automatic resumption of benefits only continues within five years of disability approval. Beyond that timeframe, individuals who do return to work and then get ill again must apply for SSDI/SSI all over again. This is unfairly restrictive for those who suffer from MS and other chronic illnesses.

A formal presentation made to the House Ways and Means Committee by Terry Moakley, Vice President for Public Affairs of the United Spinal Association to the House Ways and Means Committee on January 16, 2008 included a key recommendation to eliminate the five-year limitation for expedited reinstatement of disability benefits for chronically disabled individuals who desire to work as they are able, without jeopardizing their benefits should their condition worsen in the future.

The following excerpt of the testimony specifically addresses a key area of necessary reform...
_____________________________________________________________________
Allow ongoing presumptive re-entitlement for those able to work, but who have continuing disabilities – Continued Attachment. (Title II and SSI). We recommend that Title II and SSI disability beneficiaries have a “continued attachment” to the programs as long as their impairments last, even if they do not receive cash benefits because of their work earnings. Beneficiaries of the programs who are sometimes able and other times unable to be employed should have continued attachment to the cash and medical benefits that can be activated with a simple and expedited procedure that is as “seamless” as possible. Many beneficiaries fear working to their full potential because it might cause a permanent loss of cash and/or medical benefits. This is a particular concern for beneficiaries who (a) have relapsing/remitting conditions such as mental illness or many chronic illnesses or (b) need accommodations that may be available in one employment setting, but difficult to obtain in the future. The Ticket to Work and Work Incentives Improvement Act partially addressed this problem by allowing a limited “expedited reinstatement” to benefits, but this is not a complete solution since it is available for only 60 months from termination of cash benefits.The existing expedited reinstatement program could be improved by making the following statutory changes: (1) Eliminate the 60-month time limit; (2) Provide provisional cash and medical benefits until SSA processes the request for reinstatement (current rules limit provisional benefits to six months); (3) Ensure that both cash and medical benefits are promptly reinstated once SSA has approved the reinstatement; (4) Explicitly recognize that people may use expedited reinstatement repeatedly; and (5) Provide that beneficiaries are eligible for expedited reinstatement if they are unable to engage in SGA when they are no longer working.
_____________________________________________________________________

In short, this is an important first step in revising our nation's SSDI/SSI programs to more adequately address the unique circumstances of those battling MS and other serious chronic illnesses.

Here is the link to the entire testimony.

http://waysandmeans.house.gov/hearings.asp?formmode=view&id=6764

Please consider how you can use your strong reputation and influence to ensure that the House and Senate will work together to revise SSDI/SSI laws that will improve the security of over 400,000 Americans whose lives and livelihoods have been shattered by multiple sclerosis.

Thank you, in advance, for your help and personal involvement in this vitally important issue.

Sincerely,

(Insert your signature and address here)


=============================================
My Continued thanks to Bob, for what he has been doing, for those of us who need people like Bob.


View more MS Related articles by clicking here