MS : hope

Wednesday, February 24, 2010

Update on the Link Between CCSVI and Multiple Sclerosis

Tears are coming to my eyes as a write this. I don't know if it is the softening of my mental faculties due to MS, my own fragile emotions or a combination of all of the above; but, I just came from the National Multiple Sclerosis Society website and I am happy to report that someone has heard us! SOMEONE HAS HEARD US! And now, so much hope comes with it to all the people in the world diagnosed with MS!

February 9, 2010 - UPDATE: National MS Society leaders met with Dr. Zamboni today in advance of his invited lecture at New York University’s MS Center of Excellence. In meetings and during today’s presentation, Dr. Zamboni suggested that if further evidence supports the link between MS and CCSVI, that its treatment may ultimately add to the arsenal of therapies available for MS. He emphasized the need for more research on his hypothesis, and noted that it is still not proven whether CCSVI is a cause of MS or possibly a product of MS. Dr. Zamboni also noted that people with MS should remain on their immunomodulatory therapies as has his wife after her endovascular surgery.

The Society shares in the public urgency to expeditiously advance any lead that has the potential of stopping, repairing or preventing MS.

Wednesday, September 23, 2009

LEUKEMIA DRUG TRIALS NEWS

Oklahoma tests have concluded and the Director of MS Center of Oklahoma, Dr. Gabriel Pardo, says people with MS taking the treatment had a nearly 60% less relapse rate than those on placebo pills. Okay, so that isn't a cure. (BTW, they don't name the drug being tested in the linked article, but I assume it is alemtuzumab)

Me, I would like them to figure out what causes MS, and then, let's talk about a cure. Treatment is nice, side effects aren't so nice, a cure that is something else. Just me talking, now. I think eventually they will know what causes MS and all neurological-related immune disorder diseases and the cure will be at the geno level. It won't be a pill or injection that they can give you. But I have hope and I have some time, so I keep waiting.

WHAT IS MS?

Multiple sclerosis, or MS, is a chronic, often disabling disease that attacks the central nervous system, which is made up of the brain, spinal cord and optic nerves.

Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. The progress, severity and specific symptoms of MS are unpredictable and vary from one person to another.

Diagnosis of MS is usually made between age 20 and 40. MS affects more women than men.

About 400,000 Americans have MS. Most people with MS have a normal or near-normal life expectancy.

FDA-approved medications can reduce the number of relapses and slow down the underlying course of MS.

Source: National MS Society

Me: Until they figure out how to make money on it, a cure most likely won’t be arriving in my lifetime.

WHAT THE MS DOCs SAID THEY REALLY DON'T KNOW MUCH ABOUT:

The doctors said I now have Secondary Progressive Multiple Sclerosis. What does that mean? Life comes slower because I have to be more deliberate. Originally diagnosed September 8, 2008. One thing the doctors have right is telling me that everyone's MS is different. Well, of course. MS indiscriminately attacks the nerves. We have nerves in every square inch of our bodies. It makes me wonder if all the doctors who treat MS really do understand what that means. I once said to my Doc something is bothering me and she replied, with no thought, "That isn't MS!" I wonder how she can make such an immediate proclamation, first. Anyways, she is no longer my MS Doc. I'm not looking for sympathy, from my MS Doc. I just want a prescription, to be honest. But, after about 35 years (and counting, since I first wrote that) of exhibiting different MS symptoms, it makes sense that my MS Doc really wouldn't know... No one knows but the person who has MS, what their MS is.

HISTORY OF MISUNDERSTANDING MS

1890's - caused by the suppression of sweat; treated with herbs & bed-rest; life expectancy after diagnosis was 5 years.

1910's - caused by an unknown blood toxin; treated with purgatives & stimulants; life expectancy after diagnosis was 10 years.

1940's - caused by blood clots & poor circulation; treated with drugs that improve circulation; life expectancy after diagnosis was 18 years.

1960's - caused by allergic reaction; treated with vitamins & antihistamines; life expectancy after diagnosis was 25 years.

1996 - caused by autoimmune reaction possibly linked to virus; treated with steriods & immune system regulating drugs; life expectancy after diagnosis is essentially normal for most.

NOW - In my opinion, MS is still misunderstood, but recent breakthroughs in understanding have been made. Stay tuned!