My MS Blog

T-cell vaccine for the treatment of multiple sclerosis (MS

Gary — Tue, 24 Jan 2012 14:59:17 GMT

Tovaxin®, a cellular immunotherapy has completed a Phase 2b clinical study for the treatment of multiple sclerosis (MS). Tovaxin is specifically tailored to each patient's disease profile and is designed to reduce the number of specific subsets of autoreactive T-cells known to attack myelin. Treatment will consist of donating blood and creating a vaccine using the patient’s own cells. The vaccine cells will be irradiated to render them unable to divide, but able to evoke an immune response.

Tovaxin is manufactured using Opexa Therapeutics’ proprietary method for the production of patient-specific T-cell vaccines, which comprises the collection of blood from the MS patient, the harvest and expansion of disease-causing T-cells from the blood, and the return of these expanded, irradiated T-cells back to the patient. These attenuated T-cells, which comprise the Tovaxin vaccine, are reintroduced into the patient via subcutaneous injection to trigger a therapeutic immune system response.

The vaccines will be administered in the doctor’s office as a subcutaneous injection in the arm given five times a year. The first four injections are administered a month apart with the fifth and final injection being administered two months after the fourth. For more information on Opexa and Tovaxin, please visit Opexa Therapeutics .

FDA Approves Nuedexta For PBA

Gary — Fri, 03 Dec 2010 19:20:00 GMT

The FDA Approved Nuedexta ™ (dextromethorphan hydrobromide and quinidine sulfate). It is the first drug developed specifically to treat uncontrollable laughing or crying, also called pseudobulbar affect, or PBA.
Pseudobulbar Affect (PBA), which affects those who suffer from MS (as well as other neurological diseases and conditions). It is characterized by uncontrolled, inappropriate, and/or exaggerated episodes of crying, laughing, or other emotional display, occurring with only minimal or no stimulation to such a response.
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FDA Approves First Oral Drug to Treat Multiple Sclerosis (MS)

Gary — Wed, 22 Sep 2010 18:27:00 GMT

On September 22, 2010, The FDA, approved Gilenya (fingolimod), the first oral drug for multiple sclerosis (MS). Gilenya is used to treat relapsing and remitting form of MS. The drug has been shown to significantly reduces MS attacks. However, there can be serious side effects, with possible heart, lung, and eye toxicity and increased risk of infection. Side effect can include

Elevated liver enzymes

Macular edema (swelling of the central portion of the retina, causing distorted vision)

Elevated blood pressure

Shortness of breath

Bronchitis

Diarrhea

Bradycardia (slowing of the heartbeat, seen only upon first treatment. The FDA panel recommended that patients be required to receive their first dose under medical supervision).

A path to a cure for Multiple Sclerosis?

Gary — Tue, 22 Jun 2010 01:55:00 GMT

In the last few years, researchers have been making strides in many areas to find a cure. My feeling is that stem cells transplant therapy is the most promising path to a cure. The technique involves using autologous non-myeloablative cells to reset your immune system.

The intention of the procedure is to wipe out the immune system and then, with one’s own cells, reconstitute it with the hope that the new cells will not target myelin. The theory is to get rid of bad cells and reconstitute it with new cells from one’s own body so hopefully they haven’t been triggered yet to attach to myelin. Non-myeloablative autologous haemopoietic stem cell transplantation is intended for patients with relapsing-remitting MS.

Between January, 2003, and February, 2005, 21 patients were treated 17 of 21 patients (81%) improved by at least 1 point on the Kurtzke Expanded Disability Status Scale (EDSS), and five patients (24%) relapsed but achieved remission after further immunosuppression. After a mean of 37 months (range24—48 months), all patients were free from progression (no deterioration in EDSS score), and 16 were free of relapses.

Early results show Non-myeloablative autologous haemopoietic stem cell transplantation was able to reverses neurological deficits, but these results need to be confirmed in a randomized trial.

Studies were initiated by Richard K. Burt, MD, Associate Professor, Division of Immunotherapy Northwestern University Department of Medicine. Please Visit Disability Connections, New Treatment page to watch part 1 and 2 of Dr. Burt’s lecture on Non-myeloablative autologous haemopoietic stem cell transplantation or to learn more, contact Northwestern University Division of Immunotherapy.

Division Address
750 N. Lakeshore Dr., Suite 649
Chicago, IL60611
(312) 908-0059
(312) 908-0064 Fax

Contact Information

rburt@northwestern.edu

Source accessed June 21, 2010:

http://www.thelancet.com/journals/lancet/article/PIIS1474-4422%2809%2970017-1/abstract

MS Video Discussion Forum

Gary — Tue, 08 Jun 2010 02:49:00 GMT

We have posted some new videos about various treatments for Multiple Sclerosis. For those of you who have viewed the videos, please feel free to use this forum to discuss their content by adding a comment below. For those who have not yet viewed the videos, you may do so by clicking HERE .

AMPYRA Improves Walking In Multiple Sclerosis Patients

Gary — Tue, 01 Jun 2010 11:55:00 GMT

I wanted to share an update on my previous post regarding the new drug, AMPYRA. I am excited to share this ground breaking news with you, my friends, and look forward to learning more about this medication. I would especially like to hear from anyone who may have some experience with it, and how it goes.

March 1, 2010 -- Acordia Therapeutics, Inc. announced that AMPYRA (TM) (dalfampridine) Extended Release Tablets, 10mg is available by prescription in the United States and Puerto Rico. AMPYRA was approved on January 22, 2010 by the U.S. Food and Drug Administration (FDA) as a treatment to improve walking in patients with Multiple Sclerosis (MS). This was demonstrated in clinical trials by an increase in walking speed in some patients. AMPYRA is indicated for use in all types of MS, and can be used either alone or with existing therapies, including disease-modifying agents. To learn more, please visit Acorda Therapeutics .

The most common adverse events (incidence ≥2% and at a rate greater than
the placebo rate) for AMPYRA in MS patients were urinary tract infection,
insomnia, dizziness, headache, nausea, asthenia, back pain, balance disorder,
multiple sclerosis relapse, paresthesia, nasopharyngitis, constipation,
dyspepsia, and pharyngolaryngeal pain (6.1).
For a full list visit FDA.Gov

To report SUSPECTED ADVERSE REACTIONS, contact Acorda
Therapeutics at (800) 367-5109 or FDA at (800) FDA-1088 or
www.fda.gov/medwatch

* Have you taken AMPYRA? *

Gary — Mon, 31 May 2010 21:26:00 GMT

***** Have you taken AMPYRA? *****

We want to wish everyone a safe and fun Memorial Day weekend. Sending out many thanks to our brave military who put their lives on the line for us and the freedom we all enjoy on a daily basis.

We want to hear from you. Since its FDA approval this year, many MS patients have taken AMPYRA. Others would like to know how it’s working, how it’s helping to relieve MS symptoms. Please come share your AMPYRA experience with us.

When AMPYRA was approved by the FDA for use in March of this year, it was unknown at that time how soon it would be prescribed for use by MS patients. However, much to our happy surprise, we have heard from many who have had success with it, saying that it significantly relieves their MS symptoms, and most importantly, say that it helps them walk. This is wonderful news!

If you are looking for more information and resources about Multiple Sclerosis (MS), you can find it on our web site. We encourage you to log on to Disability Connections, and ask you to please JOIN our membership. It's FREE and will enable you to connect to and interact with others who share your unique challenges.

LDN Victory Over Multiple Sclerosis (MS)

Gary — Tue, 18 May 2010 21:30:00 GMT

Those of us who live with MS have our own personal story, our journey that includes various ups and downs. These are sometimes arduous journeys that include much pain, difficulty and of course utter frustration. So, when one of us has good news, and a personal story that is triumphant, it behooves us to learn about him or her and take what we can from it in order to benefit in our own lives. Please feel free to respond with a comment after reading Cam's story, or any other entry on this blog. Feel like sharing your story? We want to hear from you.

I was first diagnosed with MS March 2007. I then started on Rebif treatment Sept 2007. My last Rebif was June 10th 2009. My first LDN dosage was 4.5mg on June 11th 2009. A 47-year-old male, I have had RRMS for 3 years now. I fired 2 neurologists and one general physician and finally found a doctor in an MS Society clinic who currently prescribes LDN to MS patients. She prescribed 4.5 mg for me and said that I, along with other MS patients should be on 4.5 mg and should be on it.

I stopped the Rebif injections on my own volition. I did this because while LDN enhances the immune system, Rebif suppresses it. I did not want that internal battle going on within my body. I also understand that while taking LDN, the only other drug you can safely take simultaneously is Copaxone.

Before I started taking LDN, I had numerous symptoms. I had cold numbness in my hands and feet, to the point that it was painful to wear socks and shoes and gloves or mittens. I also had the sensation of bands around both of my knees. I had a serious sinus infection at the time of starting LDN. I also had extreme fatigue and no energy and was full of aches and pains. My mental awareness (brain fog) and thinking skills were diminished by 50%. In general my health was maybe 50% of what I was prior to being diagnosed with MS. I was having trouble sleeping through the night and not feeling rested when I woke up. I just felt like crap and was losing hope looking forward.

Within 3 days of taking 4.5 mg of LDN I noticed improvements in my hands and feet and the bands around my knees were gone. My sinus infection was gone in 3 days while taking no other medication than LDN. My general health and mental awareness strongly improved. After 1 week on LDN I was a new man. I went from feeling like an 80-year-old man getting close to a wheelchair to a 30-year-old man full of energy and excitement. I became alive again and got out and was able to be "Normal". My wife says to everyone now, “I can't keep up with him. It's wonderful!”

It is 11 months now since I started taking LDN; my hands and feet are almost numb-free. I have not had a relapse in 11 months and have had NO side effects from using LDN. I feel like I am 30 years old again with endless energy and full mental capability. I know that I will be on LDN for the rest of my life as the benefits of LDN are too great to stop. LDN has changed my life forever. I hope that everyone else has the same results. LDN is a wonder drug for people with auto-immune disorders.

Another bonus being on LDN is I have not had a cold or the flu in 11 months. It is quite common for people on LDN not to get colds or the flu. I am sleeping wonderfully and waking up very rested and relaxed.

I will never take Rebif ever again as I know it was slowly killing me from the inside out. During the 2 years that I was on Rebif I had 7 relapses and one bout of Bells Palsy, an ugly sinus infections and extreme fatigue. Since being on LDN for 11 months I have had no relapses no sinus infections no colds and no side effects from LDN. The bottom line is I feel like I did 20 years ago. I can say that I feel great. Now, all I hope to do is tell as many people I can about LDN. I want each and every one of them to feel as great as I feel.

Multiple Sclerosis Treatments & Reviews

Gary — Mon, 10 May 2010 15:57:00 GMT

I have been trying to find information on LDN to share with people who may not be aware of its usage in patients with Multiple sclerosis. Since my relapse in April I have been looking into other forms of treatment for MS, up to and including stem cell treatments. I have also been enrolled in an investigational study that involves a daily dosage of an oral medication called Fingolimod.

Given my recent experience, I thought it would be an interesting topic for a new column here on the blog. My idea is to create a venue where we can give feedback on the various medications and treatments for MS. Here is some information I found about Low-Dose Naltrexone, which I understand is prescribed to many MS patients. Have you taken it? How has it helped you? What can you tell us about it? If not, can you tell us what kind of treatment you have been undergoing, and how it’s going for you?

Low-Dose Naltrexone Finds Preliminary Benefit
for People with Multiple Sclerosis (MS)

Naltrexone was approved by the FDA in 1984 in a 50 mg dose for the treatment of addictions to opioids and alcohol. Naltrexone prevents the effect of such drugs by blocking opioid docking sites on the cells. In doing so, naltrexone also blocks the reception of the opioid hormones that our brain and adrenal glands produce. Many body tissues have receptors for these endorphins and enkephalins, including virtually every cell of the body's immune system.

At significantly lower doses, naltrexone has been prescribed as treatment for a variety of diseases, including various types of cancers, HIV/AIDS, Parkinson’s disease, Alzheimer’s disease, Amyotrophic Lateral Sclerosis (ALS; aka Lou Gehrig’s disease), emphysema, as well as MS and other autoimmune diseases. Until recently, there has been only limited information of Low Dose Naltrexone (LDN) and its benefit to treat MS.

LDN has been shown to provide symptomatic relief for MS, according to a number of recently published laboratory studies. Investigators cite the possibility that LDN increases levels of endorphins in the brain, which are the body’s natural pain relievers. Unfortunately, as noted by the investigators, due to study dropouts and incomplete data, they had complete data on only 60 of the 80 original participants, which weakened the statistical power of the trial results. It was suggested that their findings require confirmation in a larger, multi-center clinical trial.

Statin Drug may slow the progression of Multiple sclerosis (MS).

Gary — Tue, 27 Apr 2010 15:06:00 GMT

Recent study of cholesterol drug Lipitor shows that it can be helpful in treating MS patients. A statin drug, Lipitor reduced the development of brain legions in 55.3 percent of MS patients during the course of a study, compared to 27.6 percent of those patients who took a placebo. Of the 81 individuals in the study, some were randomly selected to take either 80 milligrams per day of the Lipitor (atorvastatin), whereas the others were given a placebo.

This data is preliminary, according to study co-leader Dr. Emmanuelle Waubant, associate professor of neurology at the MS Center at the University of California, San Francisco. These findings were part of a phase II multi-center trial, also supported by drug manufacturer Pfizer, Inc. It was decided that a study of a larger magnitude would be necessary in order to confirm that the positive effects of Lipitor on MS patients, as well as long term results.

Dr. Waubant also added that we need to conduct further research and studies in order to better understand the impact Lipitor would have on the progression of multiple sclerosis, so that they can better inform the patients and physicians of the effect of this drug. Lipitor is broadly used throughout the US and the world, and is relatively inexpensive. So it is prudent to ensure proper administration of the drug in order for it to be used as protocol for MS patients on a routine basis.

Multiple Sclerosis Q & A with R.N. Reneé

Gary — Mon, 19 Apr 2010 18:59:00 GMT

Friends,

We are pleased to add this new feature to the blog. Our friend, Reneé, has joined the Disability Connections family. She has offered to volunteer her time and expertise to help those who may have questions about their MS. Please submit your questions by using the “Add Comment” link below. Every question submitted is important to us and will be given careful consideration. However, for certain issues, we may recommend that you consult your personal physician.

A prayer for healing : For MS and Other Conditions

Gary — Tue, 13 Apr 2010 17:33:00 GMT

Many people believe that prayers help us heal. With this in mind I have added a new category to this blog called “A Prayer for Healing”. You may add your name by clicking on "Add Comment" (below). My goal is to create a reciprocal prayer group whereby people can pray for one another. This is in the hopes that we may all live in harmony with one another; be sympathetic, love as brothers, be compassionate and humble.

Please support our MS community by joining our website Disability connections. It is free to join, and it will only take a few minutes of your time. By joining, you acknowledge your support of our mission, which is to be a resource for those coping with physical challenges, mobility issues, and other types of medical disabilities. Thank you again for your support.

SSDI Advice from Our Editor, Rebecca

Rebecca — Wed, 24 Mar 2010 03:39:00 GMT

Please note: Disability Connections, Inc. is not affiliated with any law firms or government entities that deal with the issue of applying for disability. The advice and guidance offered in this column is not a guarantee that you will be approved for SSDI, and we will not be held responsible if you are denied for these and other benefits.

My friends,

If you are reading this, it’s possible you are considering application, or have already applied for Social Security Disability Income, or SSDI. Whether or not to undergo this process can be a very difficult decision to make. I know all too well, as it was a tough decision for me.

No, I don’t have MS. But I do have about eight other autoimmune conditions that I deal with on a daily basis. For my daily survival, I must monitor my daily diet, activity level, and maintain a tedious regimen of many medications, daily and weekly supplements, otherwise known as life support.

Why am I telling you all of this? Well, it wasn’t always this way for me. At one time, I was an athlete, at the top of my game. I competed regularly in both gymnastics and track while in my teens. Currently I find myself basically trapped inside a body that no longer functions properly.

When I got to the point that I could not work anymore, it was quite the rude awakening. I once was a person who could work a full time job, two part-time jobs, sing in the church choir, and still have time for volunteer work. Currently, I have maybe two to three hours in a day during which time I can perform a few tasks; then I need to rest.

Even with all of that, it was still a difficult decision to finally pull the trigger and apply for SSDI. Yet, I knew it was something I had to do in order to stay afloat. I have been on SSDI for nearly a year now, doing a bit better in some ways, and not so well, unfortunately in others.

Are you still struggling with these difficult decisions? Would you like some emotional support in order to get you through the SSDI application process? While I can’t guarantee that you will be approved, I would like to offer the benefit of my grueling experience and knowledge of the process, so as to help you maintain your sanity and stave off needless anxiety throughout the long, painstaking process. I have some helpful tips and guidance I can offer you in order to make your experience a little less painful, and hopefully help lead you to success in your journey.

Please submit your question or comment by clicking on the “comments” link below this column. I look forward to reading your questions and to helping you in the best way I can. If there is a question I cannot answer, I will do my best to point you in the right direction and find as many resources for you as possible.

High Rates of Vein Blockages Found in Multiple Sclerosis Patients

Gary — Tue, 09 Mar 2010 16:14:00 GMT

Hi friends! In light of MS awareness week, I wanted to post this research-oriented article about MS. I would love for you all to share your thoughts and ideas on this topic. For full story and video, click on the link below. Then please return here to share your comments.

Researchers in Buffalo, N.Y., have discovered that people with multiple sclerosis are more than twice as likely to have abnormal blood flow in the veins in their head and necks.

Neurology researchers at the University at Buffalo reported Wednesday preliminary results of the first clinical study to test for a new and controversial vascular condition called CCSVI, or chronic cerebro-spinal venous insufficiency.

They found that more than 55 percent of the MS patients had narrowed neck veins, causing restriction of normal outflow of blood from the brain. That compared to 25.9 percent of healthy patients. The data encourage us to continue on the same course," he said in a University of Buffalo news release.

"They show that narrowing of the extracranial veins, at the very least, is an important association in multiple sclerosis. We will know more when the MRI and other data collected in the CTEVD study are available."

Please read the full story .

AMPYRA Released To Aid Walking For MS Patients

Gary — Wed, 17 Feb 2010 21:36:00 GMT

Great News Gang! Drug development company, Acorda Therapeutics has just released the first medication proven to aid walking in MS patients. As of this month, the FDA has approved AMPYRA, a time-release oral medication, expected to be available to the public in March 2010.

Acorda Therapeutics is a biotechnological company that develops therapies for MS, spinal cord injury and other nervous system disorders. They have also developed a drug called Zanaflex Capsules, a short-acting drug for the management of spasticity.

How the drug works:

AMPYRA is a potassium channel blocker that has been found to improve impulse conduction in nerve fibers in which the myelin has been damaged.

What you should know:

Wholesale acquisition cost of the drug is $1,056 per 30-day supply
Acorda has launched a patient assistance program to help with out-of-pocket expense of the drug for those who could benefit from it; their goal is to help any patients they can, regardless of patient’s level of insurance or income
While there has been significant success with this medication during drug trials, AMPYRA is not without side effects (see below)

Side Effects and Risk Factors:

AMPYRA can cause seizures, and the risk increases with increasing doses of the drug.
AMPYRA should not be taken by patients with existing kidney problems should not be taken by patients with existing kidney problems
Urinary Tract Infections (UTIs) have been reported in some patients taking the medication
Other adverse events include but are not limited to insomnia, dizziness, headache, nausea, asthenia, back pain, balance disorder, MS relapse, paresthesia, nasopharyngitis, constipation, dyspepsia, and phryngolaryngeal pain.

To read the latest article on AMPYRA, FAQs and more, please visit MS Society.

Multiple Sclerosis and Depression

Gary — Wed, 10 Feb 2010 23:18:00 GMT

Depression and Multiple Sclerosis:

When I was first diagnosed with MS, I read that depression may develop at some point during the course of the illness. It seemed rather logical, that receiving a diagnosis of having a chronic illness with the potential for progression is depressing. I had not experienced any sort of depression other then the initial feelings I had after being diagnosed with MS. In January of this year 2009, (about four years after my diagnosis) I began having severe bouts of depression. I remember being on the subway one day thinking about some personal turbulence I was enduring at the time, when suddenly I began to have this overwhelming and uncontrollable feeling of sadness, so much so, that I began crying. It was quite embarrassing.

Here I was, a thirty-something-year-old man in a crowded train, crying like a baby. I wanted to hide or run but there was no place to go. When I got home I looked into Depression, in connection to MS. I found out there was something called Pseudobulbar Affect (PBA), which impacts those who suffer from MS (as well as other neurologic diseases and conditions). It is characterized by uncontrolled, inappropriate, and/or exaggerated episodes of crying, laughing, or other emotional display, occurring with only minimal or no stimulation to such a response. The experience was humiliating, and I am not sure how common it is. If anyone can help shed some light on this or can relate to this experience, I would greatly appreciate it. I am going to look more into PBA, its causes and related symptoms, and will post my findings.

MS diagnoses prompts random acts of kindness

Gary — Mon, 08 Feb 2010 04:04:00 GMT

I hope everybody had a great weekend. Unfortunately for me, my Jets lost. Aside from that, I had a great opportunity, to become acquainted with a woman by the name of Jackie Waldman. Jackie is an accomplished author of a series of books called The Courage to Give. After her diagnoses of MS, Jackie decided to take her attention off of her disease by taking initiative to learn about others who have triumphed over their own tragedy. So, just as she distracted herself by learning about others, she found out that others benefitted after their own tragedies, by reaching out to others in order to help them deal with similar situations.

Initially this concept sounded odd to me. My first thought was, “If I myself need help, how can I be brought to help others?” After some deliberation and experimenting I realized the greatness of this concept. One day I decided to perform random acts of kindness, and found the results to be amazing, even contagious. The rewards are simple; by helping others you yourself will feel good, and therefore capable of accomplishing other good things. As a result you will feel start to feel better and have a sense that perhaps you can overcome your own battles. Secondly, when we feel as though we are going through a dark period in our lives, we often feel that we are alone. If we seek to help others during our own time of need, we may start to realize that there are many people in similar situations. This is important as it can help us all to realize that we are not alone.

I encourage you all to experiment with this idea, if you haven’t already, and to please share your experience with us. If you have experienced something like this before, please feel free to share your inspiring story with us. These kinds of stories can help to inspire others in ways you might not ever fathom. If you would like some ideas or you are interested in finding out ways to help others, you can order any of the books in the series, The Courage to Give. To learn more about these stories, or the author herself, please follow this link The Courage to Give.

Indian Girl, Don't Cry (an MS discovery story)

Gary — Mon, 01 Feb 2010 13:05:00 GMT

This is Pam's story, as told by Pam herself. However, she is quite a prolific writer, and had articulated her story in such detail that we needed to edit it for space before publishing it to the blog. Our editor hopes that this rendition will do her brave story the justice it so deserves.

During a real estate class in the winter of 2008, I had a realization that my hand became numb while I was taking notes. At first I passed if off as a bodily reaction to the bitter cold New Jersey winter. But several hours later, I thought it was unusual that it was still numb. I dismissed it, thinking it wasn’t anything to worry about.

Soon after that day, I found myself in another situation, this time with my right leg. Walking to my car, my right leg nearly gave out under me. Instead of my usual firm gait, I found myself having to walk very slowly and gingerly, holding on to a building so as not to fully collapse. Once again, I figured it was the severe cold weather causing my near fall. Once I made it to my car I phoned my best friend, who prevailed upon me to see my doctor later that week.

I rolled my eyes when the doctor ordered a CT-scan of my brain to see what was going on. A couple days later, the doctor's office called, citing they needed to see me right away. My situation turned almost surreal, as the woman from the doctor’s office sounded overly concerned, and my coworkers seemed to be nicer than usual. I started to wonder what was happening.

At the doctor’s office, I learned the alarming news that there was something in my brain that didn’t belong; one possibility was that it was a tumor. I was referred to the Neuroscience Institute for more tests. I was on pins and needles for the entire month before I could get an appointment with them. While this was not exactly the news we were hoping for, my boyfriend comforted me during this crisis, as it were. When I finally made it in for my appointment, they informed me that the unusual area in my brain was consistent with that of a stroke. I was then given blood thinners to reduce the risk of another stroke; then I was sent for further testing, to include MRIs, and Echocardiogram (EKG), and referred to see a more specialized neurologist.

A few months later, in better weather, I finally made it to see the neurologist. He stated that this growth in my brain was not a tumor, nor was it a stroke that I had experienced. He informed me that I had something called Multiple Sclerosis (MS). I nicely asked him how we go about getting rid of it. I had no idea what this fancy medical term referred to, and didn’t think it was anything too serious. It was then that I learned that it is a serious auto immune neurological condition, for which there is no cure. I was also delivered the news that I would have to take certain treatments in injection form. I was also then forwarded to another kind of neurologist who specializes in MS.

After making the appointment to see the even more specialized neurologist, I went home and straight to the search engines. From the fist words I read about this thing called Multiple Sclerosis, I was reduced to tears. It seems this is quite rare in Asians. So then thought even with that, I somehow happened to get it. The test this doctor ordered was something called a Lumbar Puncture (LP), aka a spinal tap, and it caused such excruciating pain, and a terrific headache, I could hardly stand it. No amount of pain killers would touch this pain. Even a visit to the ER and several fluid infusions later, I was released…only to return a few days later. Finally, two weeks later, relief arrived and I was free of my massive headache and able to walk once again.

This was a very difficult thing to explain to my very traditional Indian family – what is MS, how I somehow contracted it, the fact that there is no cure, etc. It was just not something they could accept. My parents did their best to prevail upon me to move to India for their local medical "cures". It was upsetting to me that they had a difficult time understanding or accepting my new challenge. My fatigue was dismissed by them as laziness, and needless excuses. Unfortunately, I have not been in contact with my parents much since then. But I am thankful to have some wonderful friends in my life. My feeling is that MS is to serve as a reminder to me that I am blessed, and that things could always be worse. I keep reminding myself that I am a strong Indian woman, and that is something that will never change.

Relationship Question

Gary — Mon, 25 Jan 2010 00:24:00 GMT

Hi Gary and gang,

The weather can affect how we feel physically; and how we feel physically can affect how we feel emotionally. Consequently, a person with any sort of long term or chronic illness is always prone to loneliness, isolation and depression, or any combination of the three. All the more reason to reach out to those who cope with any sort of illness - whether through a blog, email or by phone.

One specific issue that MS patients sometimes deal with, as mentioned in this article is the pseudobulbar affect (PBA). This is a condition that can cause random bouts of extreme emotional outbursts, such as laughing or crying without an obvious trigger. While I don't personally have MS, someone in my life deals with it, someone I love with all my heart and care about a great deal.

While he currently doesn't deal with major challenges of MS on a daily basis, I personally think he is dealing with some emotional issues, yet he doesn't seem to want to admit it or open up about it.

I myself deal with a number of chronic issues, of which depression is one, and has been a part of my existence for a long time. I also have studied psychology, so I know all too well the signs that indicate someone is going through some sort of depression.

I don't know what I can do for this person whom I care about so much. All I want is to be there for him, make him happy and do what I can to make his life better by being a part of it. Can anyone shed some light on this for me? I'd sure appreciate it.

MS Meds

Gary — Sun, 10 Jan 2010 20:11:00 GMT

Hey gang! I've started a new blog segment. I would like start a new topic weekly, and to highlighting a different person's MS Journey as our Feature Story. We welcome you to share your story, if you are willing to share with us.

This Feature Story is from our friend, Margaret. She was gracious enough to share her experience with us. I'm sure we can learn from her and understand that we are not alone in the experiences we have had to deal with in our own individual circumstances. Your stories can be easily submitted either in writing as a comment or even as a video.

To be a part of our "Feature Story" segment, or to learn more about how you can be involved, please feel free to contact us at support@dconnections.org.

Margaret's story:

My name is Margaret and I was diagnosed with relapsing MS 3 years ago; I am 33 now.

The left side of my body had been slowly detracting, making me unable to work in the medical career that I had. I had been diagnosed with serious depression over 15 years before, not knowing I had MS. I have been on Prozac, Xanax, Zoloft, Seroquel, Effexor, and Buspar. I had terrible fatigue and needed assistance with simple everyday activities.

I tried all the typical treatment forms, shots, shots and more shots. I am only 5'3" and weigh 100 lbs, so I had serious side affects. I stopped each treatment after only one week.

The latest treatment I had was Tysabri*. I have now been on it for 16 months and after my own rigorous physical therapy, I am now almost completely mobile on my left side and take NO ANTIDEPRESSANTS anymore.

My energy levels have returned and I can honestly and happily say I have almost restored the person I was before. I have been awarded disability and now, I enjoy my life with every moment!

Here is a list of the more common medication treatments used to treat MS*

Avonex (interferon beta-1a)
Betaseron (interferon beta-1b)
Copaxone (glatiramer acetate)
Extavia (interferon beta-1b)
Novantrone (mitoxantrone)
Rebif (interferon beta-1a)
Tysabri (natalizumab)
Corticosteroids