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Tag Archives: Multiple Sclerosis

A phase 1 trial of a new treatment to reset the immune systems of multiple sclerosis patients shows the therapy is safe and highly effective.

Multiple Sclerosis Breakthrough

German researchers today unveiled the results of a study on a new procedure that safely resets a multiple sclerosis (MS) patient’s immune system. It can reduce the body’s attacks on the protective myelin sheath that insulates nerve cells in the brain.

For this small Phase 1 trial, which was a collaboration between Northwestern University’s Feinberg School of Medicine, University Hospital Zurich in Switzerland, and University Medical Center Hamburg-Eppendorf in Germany, ten patients were selected. Eight patients with relapsing-remitting MS (RRMS) and two with secondary progressive MS (SPMS) were enrolled initially, but one RRMS patient withdrew before the procedure.

Multiple sclerosis is an autoimmune disease in which the immune system attacks the myelin covering that insulates nerve cells in the central nervous system, which includes the brain and spinal cord. MS is a chronic, degenerative, and often disabling disease affecting more than 400,000 people in the U.S. and more than 1.2 million people worldwide. Symptoms can range from mild numbness to paralysis and blindness.

Pressing the Immune System’s “Reset” Button

The study involved giving patients a single infusion of their own white blood cells, or T-cells, which were processed and then reintroduced into the body. The T-cells were used to deliver billions of myelin antigens into the bloodstream, forcing the patients’ immune systems to recognize the antigens as harmless and build up a tolerance to them. An antigen is a substance that the body believes is a harmful invader. When the body detects an antigen, it releases antibodies to find and destroy it.

In patients with MS, the body creates antibodies to fight very specific antigens, in this case myelin-specific peptides, residing in the central nervous system. The seven antigens researchers used in this study were all proteins found in myelin. Using more than one antigen increased the odds that the correct antigen targeted by the patient’s immune system would be included.

The patients’ T-cells were isolated and then coupled with all seven antigens used in the trial. The coupling was achieved using a chemical cross-linker called EDC that allows the antigens to stick to the T-cells but does not, itself, become part of that bond.

These T-cells, with their antigen hitchhikers, were then rinsed twice to remove the cross-linker and re-suspended in the patient’s blood plasma. This cocktail of antigen-spiked T-cells, suspended in plasma, was then given to the patient through an IV. The process from start to finish took about nine hours.

Seeing Dramatic Results

The results showed that the therapy was safe and reduced the patients’ immune system attacks on myelin by as much as 50 to 75 percent.

“The therapy stops autoimmune responses that are already activated and prevents the activation of new autoimmune cells,” said Dr. Stephen D. Miller, Ph.D., a professor of microbiology and immunology at the Feinberg School of Medicine in Chicago, Ill., in an interview with Healthline. “Our approach leaves the function of the normal immune system intact. That’s the holy grail.”

According to the study, the side effects of the treatment were virtually non-existent. The only effect of note was one patient’s complaint about a “metallic taste” after the injection.

“This treatment should not lead to any major side effects (that is our hope and expectation) and be highly specific, i.e. leave normal immune responses that we need to defend ourselves against infections untouched,” the study’s principal investigator Dr. Roland Martin told Healthline.

What This Could Mean for MS Patients

For the hundreds of thousands of M.S. sufferers in the United States, this is perhaps the most promising news of a non-drug treatment to surface in years. Although there has been much recent excitement over FDA approval of several new drug therapies for MS, they are all part of either a daily, every-other-day, weekly, or monthly regimen to which a patient is indefinitely tied, at a cost that many cannot afford.

For safety reasons, this trial was conducted in a hospital setting, but if approved, the treatment will most likely be an outpatient procedure.

A single-dose treatment with no side effects, performed in an outpatient setting, that leaves a patient’s immune system intact sounds almost too good to be true. However, further testing is necessary to validate the safety and effectiveness of the procedure. “At this point we are trying to acquire funding to carry this process into a phase 2a trial,” Miller said.

When asked how long it might take to complete additional trials and the FDA approval process, Miller speculates, “Realistically, this could take three to four years.” Compared to other trials for new drugs and treatments, however, three to four years is practically the blink of an eye.

“The phase 2a trial is fully planned, and we have approached various funding sources, among them the European Union,” Martin said. “We have also begun to discuss the project with pharmaceutical and biotech companies and hope to find support in the near future. The phase 2a trial will most likely be a two to four center study, and if a US center is interested, we are very open as long as this would not create a major extra hurdle with respect to regulatory filings.”

Life as a dad with MS isn’t easy, life as a dad with MS can be hard but, I WILL carry my boy into the end zone.

Every hour of every day, someone else is diagnosed with MS. MS defined my 31st birthday. No parties,  my present was a diagnosis of multiple sclerosis after a week in the hospital. It may have hit me harder than normal. Within 6 months my mood swings and heat sensitivity had cost me my career. In the next 2 years I’d lose equilibrium, endurance, and see my feelings of worthlessness, and my flawed attempts to make myself feel worth something, take more of my health and my family away from me. I don’t ever want another human being to suffer all I have or worst. I don’t ever want my son to give up, like I first did.That’s why I registered for Walk MS 2012 and that’s why I’m asking you to support my fund raising efforts with a tax-deductible donation.

The National Multiple Sclerosis Society is dedicated to ending the devastating effects of MS but they can’t do it without our help. It’s faster and easier than ever to support this cause that’s so important to me. Simply click on the link at the bottom of this message. If you prefer, you can send your contribution to the address listed below.

Any amount, great or small, helps to make a difference in the lives of people with MS. I appreciate your support and look forward to letting you know how I do.

P.S. If you would like more information about the National Multiple Sclerosis Society, how proceeds from Walk MS are used, or the other ways you can get involved in the fight against MS, please visit nationalmssociety.org.

Click here to visit my personal page.
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Interesting news from across the Atlantic.

Research Proving Link Between Virus And MS Could Point The Way To Treatment And Prevention.

Seems I blew by injection 500, 86 nights ago! Should be 587 but, I’m trying to stretch the last few injections of Copaxone seeing as how they are the last for a while. I’ve got my application out to AssistRX and hopefully I qualify. I don’t know what options i have other than that. I don’t make enough on my disability check to cover my rent, phone, electric, food for myself and a three year-old, a monthly “High-Risk” insurance policy, and the inevitable co-pay. Our esteemed governor has decided that if you make more than $900 monthly on disability, you no longer require medicaid. Does he not know that the median rent in New Jersey is around $1000 a month, unless you live in a subsidized project, which has a 2 year plus waiting list.

I guess he’s too busy embarrassing our state with his Tony Soprano antics, campaigning for Mitt Romney. Funny, Gov.Christie comes out against “The Jersey Shore”, and then acts like a member of the cast every chance he gets. Enough…

Day 597-Back of right arm
Had to ask mom for help tonight with my injection, as I tried my best to keep the shots 2 inches from the previous weeks. I’ve been having issues with body temperature lately. Last night and tonight where 37* outdoors, my thermostat set to 65* with drafty windows and a huge draft from the A/C still in my bedroom window, and I had to place a cold towel on my head and my T-shirt collar was/is moist from sweating. I don’t know wat else to do…open a window? Oh the joys of MS.

Be well!

It’s been quite a long time since I’d posted a new blog. Breaking all my promise of keeping everyone involved. Two weeks ago I started walking without my cane and not feeling as weak as I had. It was really an overnight change. Seems, that I finally went into remission after a year long relapse.

Still taking Copaxone, haven’t had the eye exam required before I start on Gelinya. Fuck i procrastinate.

My son, Shea, turned THREE on May 22nd. We threw him a Thomas Party. I even BAKED the Thomas cake! God, it felt good to be able to do something I hadn’t done in over a year. Doing it for my son felt even better. i even picked him up for the first time in over a year, without fear of falling. THAT, felt even better. You start to appreciate the little things in life when you have Multiple Sclerosis.

The sad reality is I can’t even think of MS right now, and this is supposed to be an Ms blog. I’ve been sitting home, reminiscing, crying about my son’s mother. She even texted me once, “what does Best Western” mean to you?”. When I texted her back what it meant to me, her reply was that she couldn’t remember anything good, just the bad that had happened.

I’ll fill you in, we had decided to go to Warped Tour ’06, at that point we weren’t engaged yet. A girl I had a sexual encounter with and worked with, texted something that upset her. We ended up fighting at Warped Tour in Pittsburgh. But there was a ton of special memories that happened that day. And for me, before the argument and on the way home, it was when I decided I wanted to marry her. This happened again on our flight back from Florida in ’07. A woman I hadn’t seen since ’05 texted me on the flight home.She didn’t believe me, I know, but, she didn’t leave me. She was/is an incredibly strong woman.

I was a complete jerk after my ex, Rachel, had broken up with me.I had left my ex-wife for her and after ten months it was over. She left me via IM on my first day of work at a new job. So after her I became a womanizing jerk.My exploits during that time were legend, and my son’s mother, having been a friend since before the break up, knew EVERYTHING.

I don’t know exactly what happened to convince her to pack up our son and leave me. It was right after a hospital stay for an exacerbation, and my unemployment had run out. I had so much on my mind at the time, I didn’t realize anything was wrong. I was trying to keep us in our apartment. She had been saying before the break up, that we should go back home and not spend the last of my savings. she had threatened me with leaving if i didn’t go to the hospital during my exacerbation. Then she left me on the day I got home. I guess she really had time to think about how horrible I was while she was at her parents on those weekends she had started to go away.

She says she hates my personality, that I’m too quick to make friends and that I flirt with everyone without realizing. She says she loves me but, can’t let herself go back to that place she was in before. I say, I realize what an asshole I was, I know the horrible things I did and let happen, I also know how important she was to me, and how I’m willing to crawl on my hands and knees for the chance to show her.

I’ve been listening to the most depressing songs I could find today. But, i realize the song she asked me to download for her and make a CD of, “Jar Of Hearts”, is about us. She may not realize it, I always read into song lyrics way too much but, it is us.


Yeah…I’m a Star Wars geek.

Day 294: Right hip.
Injections to the hip always suck for me, even after 82 injections to the hips.
There was no site reaction, no itchiness, just the the “OH WOW THAT SUCKS!” sting of the injection.

Went to see my pain management doctor today; got scheduled for a few injections to my spine. Yipee *can you feel the sarcasm?* But, a little pain to get rid of the knife wedged between my vertebrae is well worth it.

Visited my new neurologist today too. Was very surprised that he spent 45 minutes discussing my disease, the diagnosis, the events surrounding the diagnosis. The doc was like an MS detective. I was really happy to see he was very knowledgeable about MS, research, new drugs etc…even though I’m his only MS patient.

After completing my physical examination; reflex, sensation, etc. He came to the conclusion that my back and leg problems were not caused by MS but, rather my obesity. I explained to him that I had gotten my weight under control on several occasions, once losing almost 100lbs. through a vegetarian diet and exercise but, my inability to exercise now was hampering any serious weight loss. He advised me to give it an honest try at losing some weight on my own again.If my mobility issues became a problem he would recommended Lap Band surgery and said he would aggressively seek it through my primary care Dr.

The thinking being the weird nerve sensations I feel, aren’t caused by my MS but, rather by my extremely high blood sugar. My leg weakness and knee problems, fatigue, etc. all problems reduced by losing weight.

Well, I’m not totally for it but, at least it’s not vanity causing me to do it. And the band can always be adjusted once my weight is under control. 😦

The Neurologist also ordered some blood work, wanting to be sure of various things before putting me on Gelinya, the oral MS disease modifying therapy. So no more needles after the blood work, no more self injections. This, the doctor said, was the one thing he could do on my initial visit. Since, I had been reffered to him following an MS event, he had no fear of disrupting a treatment that was working well for me.

He asked about my progression, commenting “Yeah, that’s what it does, picks you apart.” When I bumped into him trying to climb the examination table and said “I’m sorry”, he grabbed me by the shoulders, helped me position myself on the table, and replied “You, have NOTHING to be sorry about.You’re sick.” Echoing what my big brother says every time he hears me apologizing for everything.

On a side note: When I switch from disease modifying therapies….what will I call my blog???

Dr. Lamazov also said he’d brush up on Ampyra, the MS walking drug, for me because he didn’t know enough about it to comfortably write dosing amounts, etc. Wow, a doctor who, not only obviously had been paying attention at the beginning of the visit but, was also open to learn a little more about what I wanted. What an AWESOME neurologists’ visit.

TODAY WAS A GOOD DAY!

BE WELL, LIVE WELL, NO REGRETS

After the premier tonight of Game Of Thrones you’ll understand the title of this post. Game Of Thrones, a book I read 8 years ago and thought no one would ever make anything mainstream from it but, I wished they would. HERE WE ARE tonight on HBO “A GAME OF THRONES” comes to life, albeit with the “A” of it’s book title.

BE WELL: When you are healthy, even when you are fighting a chronic illness embrace it. Grab those moments with both hands.

LIVE WELL: Live up to your abilities and beyond if you can. You never know when they’ll no longer be there.

NO REGRETS: Regret will kill you as sure as disease.

Well that’s all for Sunday afternoon, my son is napping, I’m waiting for his mom to arrive and the Rangers are home for Game 3 against the Cap. LET’S GO RANGERS!!!

How do you prove you are willing to do everything you can for someone, and that you’ve changed when the outside forces you can’t control make you seem like you haven’t.

My son’s mother had suddenly changed her tone on texts and we were having dinner and watching a movie. All very friendly. Friendlier than we had been in a long time. Suddenly a noise. she runs to see what it is and comes back with my cell phone, tosses it in my lap and says “you better answer her she seems mad.” Goodbye followed shortly after. My awkward attempt at a goodbye was “sooo, um have you met anyone?” “No I haven’t met anyone, not really” was her reply as she hugged and kissed our son farewell. WHAT AN IDIOT I AM!!!

I can see the thought formulating in her mind. ‘He’s only after me because he’s afraid I’ve met someone and he wants me to answer him because he doesn’t want to move forward without a final chance’. I can see this because four months ago I DID DO that and she egged it on “go be with someone else” But, when it happened she became so mad, our peaceful separation and midnight rendezvous became few and far between and more angry. I had betrayed her…I guess I was supposed to have stayed happy with just sex.

Today, I thought we had taken a step towards being friends. Spending time together was good until an unwarranted, unwanted text message ruined the moment. Though looking back on it, it wasn’t particularly a perfect moment. I guess nothing ever really was.

I missed my Copaxone injection today. All I wanted to do was sleep once our night together ended and it seemed like my son was on his way as well. So we slept. He’s still peacefully asleep while his daddy stays up, since two a.m., morning the emotional lose of his mother.

Let’s touch on some basics:

BE WELL: When you are healthy, even when you are fighting a chronic illness embrace it. Grab those moments with both hands.

LIVE WELL: Live up to your abilities and beyond if you can. You never know when they’ll no longer be there.

NO REGRETS: Regret will kill you as sure as disease. If you have a doubt about the morality of what you are doing. If you’d be ashamed if your child DID what you are doing or about to do. Don’t.

BE WELL! LIVE WELL!! NO REGRETS!!

Funny how I sometimes have a hard time remembering yesterday. But, I can remember the day and way I met someone, well, what seems like an eternity ago. I remember meeting my son’s mother (insert HOW I MET YOUR MOTHER omg here). I remember how we drove around in her car, with me trying to hold her hand and kiss her at every red light. I remember when she got a call from her little sister and she asked me if I cared if we went to pick her up at her boyfriend’s? I remember waiting in the car with my AFI hood over my head as she described how her sister’s boyfriend had hit her sister. And keeping that hood on the entire time while we drove her home and she went in to her parents’ house.

I remember all of this, painfully, wishing I had known then what I know now. So I could have approached the start of things differently, and maybe the whole thing would have been different.

But the past, as they say, is a memory. We aren’t together anymore. Haven’t been since this blog was started. She couldn’t forgive my past sins and when she felt that resentment…she couldn’t resist the push apart. And I don’t blame her. I ache over it. I resent the moment of it as I was returning home from an MS-forced hospital stay. But, I truly don’t blame her for any of it. Not all sins can be forgiven or reconciled.

“When routine bites hard. And ambitions are low. And resentment rides hard. But, emotions won’t grow. And we’re changing our ways. Taking different roads. Love, love will tear us apart again.”

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