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Category Archives: Multiple Sclerosis

So after the extremely screwed up last 6 years I’ve survived with MS I’ve come to the realization that not EVERYONE is an inconsiderate a$$hole and the world isn’t out to get me. It’s the MS that’s out to get me. This realization came much to late in some cases but, at least going forward, barring anything new, I have a little insight as to my moods. MS..THIS SONGS FOR YOU!

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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.”

I am me. I may be missing a few pieces but, I’m not broken. I may not be complete, but I am whole.

 Already the gun lobby and GOP are sending e-mails(I signed up as a GOP supporter) warning that the Obama administration is looking to take away our right to bear arms. It’s obvious that any meaningful gun control or limitations are going to be fought and will be changed, repealed, or left to expire; just like Obama himself let the Clinton Era Assault weapons Ban EXPIRE in 2004. The only change that would be permanent or more difficult to just sign away would be an amendment to the US Constitution. Please sign this and make in a message from Americans that we support gun control, not a gun ban. That we don’t need 100 round clips in assault weapons to protect ourselves or hunt. I’ve never been taught how to shoot by anyone except Nintendo and the one time I went to a range I put 9 shots center mass out of a REGULAR capacity clip. If you need 100 round clip you need to practice more or go back to playing Duck Hunt.http://www.causes.com/causes/807102-we-need-an-ammendment-to-the-2nd-ammendment

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70 injections away from 2 years plus on Copaxone. My neurologist wants to put me on Ampyra and Gilenya but, apparently my docs aren’t communicating. Test that my neuro ordered, my dr. did. yet still haven’t sent the results back to the neuro. Wish they’d make up already. The last thing I need is MS AND my medical support team having a tiff.

All jokes aside, this disease gets me down sometimes. Not just by making parts of my leg numb and the worst times. I went three days last week ignoring all my medication just thinking to myself; “none of it is going to make me better. So why bother?” After just three days I was stiff and aching, everything hurt and I’d gotten out of my funk. No one knows this because I tell everyone I’m fine and I don’t look like I’m falling apart. It just hasn’t changed me on the outside and I don’t think the people around are equipped to handle any other answer than “I’m fine”

Going on 5 years plus and I’m fine. 🙂

I figured it was about time I gave the world a new post.

Day # I’ve lost track too many times to try counting but, I’ll figure it all out FYI someday.

Belly shot. You’d think with the risk of Lipotrophy (permanent destruction of subcutaneous fat cells) I’d lose this damn gut already. Wishful thinking aside I’m doing much better. I’ve been walking and playing with my son normally since mid April.

My friend spoke to a rehab therapist about Vestibular Rehabilitation for me. And, it turned out THAT was her specialty. Called to get applications from my state transit’s ParaTransit service and I spoke with my doctor about being certified for alternative medicine.

The last bit was brought about by the recent death of a childhood friend. That and my sleep apnea have made me deathly afraid of taking any painkillers where it states on the label that it MAY SUPPRESS RESPIRATION

I’ve learned that MS actually does make me different than other people. I DON’T put on my pants like everyone else; one leg at a time. I’m usually laying in bed when I put my pants on BOTH legs at once 😛

I was sitting here mourning the fact I hadn’t won the $640million Mega Millions when The Rachel Maddow show reported on parades welcoming home our troops from Iraq.And I realized we haven’t honored the returning troops in NYC. I mean there is a reason it’s called the CANYON OF HEROES. So I started a petition to get an Iraq and Afghanistan ticker tape parade for our troops. http://www.causes.com/causes/660603-clebrate-our-troops join the cause. 

I know some will argue we’re still in Afghanistan but, in WW2 we held a victory parade for Europe and then one for victory in Japan. Where’s our patriotic spirit now? Where’s our respect for the sacrifice of the troops even if we aren’t patriotic? MS has taken a lot from me but, it asn’t taken my national pride, and it’s not about pride of the politics of government that run our nation. It’s pride in the people that live and sometimes choose to die for our nation.

Day # almost unbearable to count, I know I’m in the upper 600s and I’m patiently awaiting my Tom and Jerry moment; when I drink a glass of water and watch it come out of me like a sprinkler. It’s become such a daily routine that my 3 year old son yells at me when he’s not allowed to push the button on my Autoject. 

 

I haven’t had an episode since the one night I took two Benadryl and woke up without the use of my legs. I called my mom and dad and struggled to stand up while my toddler lay sleeping in bed. I couldn’t control my urge to urinate while I failed repeatedly to stand up. My dad had needed a break because of his COPD and my son had woken up. I crawled out to the living room, pulled myself up on the couch and, with my son petting my legs with a concerned look on his face, I stood up. I blame that one on the Benadryl, since muscle weakness and loss of balance are the symptoms of taking too much Benadryl.

 

I’ve met, and attempted to love, some people who in hindsight weren’t worth the time or trouble. Some people don’t appreciate just how much of a gift your time, money, and emotions are when you live with MS, or any other illness, that makes moving and stressing a life or death situation. It seems in the end…

We are all looking for a happily ever after but, most of us only find misery. 

 

I already found my MiSery almost 5 years ago…I don’t have time or energy for the misery you want to bring me. I reserve that energy for my son and my family and my friends, they may bring me stress but, they give me love unconditionally. That’s what we have to focus on, the energy, light, and love that’s in the world for us. We have to take that and carry on.

 

Follow me: @harrymora on Twitter

 

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.

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