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.

Is there anything fun about changing health plans? NO!

Okay, let's cut right to the chase. I will leave out the names to protect the guilty. In December of last year, I received a notice from the insurance company that runs my company health plan. I received that notice BEFORE they notified my company! Seems they wanted to stop doing business in the state of Texas, which in itself is pretty astounding because Texas is probably weathering this international economic storm as well as any state. So, the powers that be at my company scrambled to find a replacement insurance health plan and they did quite well and come January 1, I was on a new health plan. I opted for the savings health plan, which has me donating each month toward a balance which is used toward my deductible when I require health services or a prescription. Sound familiar? Okay. So, in December we had an orientation meeting with the insurer and I discovered that Betaseron is not one of the prescription pharmaceuticals covered on the "approved list." So, I brought that up to the rep after the meeting and I was told not to worry, that she would look into it. About three weeks later, I still hadn't heard, so I make the call. She calls back a couple days later and guess what? Betaseron is approved and all I have to do is contact the mail order pharmacy to get the paperwork done. Let me give you the brief and almost unbelievable rundown on Betaseron. Betaseron is free! Normally it is no more than $50 per month, but effective last September, due to the economy, BetaPlus declared that Betaseron would be NO COST! As I just described it, would you say you understand what I am saying? Do I need to say anymore than that? Betaseron is no cost. That's right. You got it. Well, it wasn't so easy for the insurance company to understand. At first, I received a call from my doctor office and they said the the insurance company had denied the prescription for Betaseron. I say that's impossible because I did all the footwork up front. Well, a phone call to my insurance company rep was the next step. She said, no, you weren't denied. That's impossible. I give everyone each other's phone numbers; the insurance company, the pharmacy, the doctors office, and BetaPlus and I tell them to figure it out and call me when it is. Two weeks later, my insurance company rep calls and says, "I have good news, You are cleared for takeoff. And, the cost is $2,500 deductible and $50 per month!" I said, "No. Betaseron is no cost to me." She said, "No, your plan says $2,500/$50." So, I get my HR assistant involved and she says, "They're right. I can't help you." I said, "I know what's right and that isn't it. Thanks anyways." So the head HR person comes to my office. I give her the story and she says she understands that Betaseron is supposed to be no cost and she will try to help. I thanked her, because I was busy at work and didn't have time. By the end of the week, she emailed me with the message that she made no headway but she is working on it. After a couple sleepless nights on the weekend I figured out what I had to do. It was obvious to me that the insurance company was not hearing the message that BetaPlus said that Betaseron is no cost. I had to do something to kick the insurance company into gear. I had to hurt the insurance company where it hurt the most. Monday morning I called the insurance company rep and told her that in one hour I would be canceling my participation in the company health plan and I would contract for the Betaseron with BetaPlus myself, because as I had been telling her, with insurance or without insurance, the cost of Betaseron is $0. Well, that was the last thing she wanted to hear, because you know, the insurance business is not a money losing business. My company pays a lot every month for me to be a member of that health plan. I pay a little, but the lion's share is paid by my company. Within 30 minutes, my insurance company rep called with the news. "I don't know how it happened, but BetaPlus has agreed to pay for the deductible and your monthly cost is $0!" I just thanked her, but I hung up the phone knowing that they had never called BetaPlus until just now. Can I blame them? I don't. I realize that the people who work at the insurance company have processed many thousands, maybe millions of clients and they had no perception of anyone getting their prescription filled for $0. They had probably fielded so many calls from people thinking that the plan they signed up for wasn't supposed to work like that and they had no idea it would cost that much. There answer was always the same. "That's the plan you signed up for." A prescription for $0? That was totally out of the box thinking for them. So, they didn't even try until they were forced to, by my threat to cancel them. So, yes, I laughed after it was all said and done, but it was not a laugh that indicated that this was fun. It was a laugh that I was right and because I was persistent, it all turned out the way I had been telling everyone. They just weren't listening.

Is MS really MS?

I am not so sure anymore. Since I was diagnosed, I have looked into it. No matter how hard I try, I have never been able to trust doctors completely and realizing from the beginning that they really didn't know what caused MS, doubt set in upon me on the medication that was being prescribed. Recently, my doubt has grown even more. Perhaps I am the last MS diagnosed person to find out about Dr Zamboni and his findings. Perhaps not. Anyways, from how I understand it, MS is merely a symptom of something that isn't really a immune condition at all. What we are all subject to is a vascular condition where the blood flow from your brain and spine is constricted due to narrower than normal veins. That causes iron to collect there and allows the blood-brain barrier to be permeated and that is what causes the brain and spine lesions. Yes, maybe your legs feel numbness, but do they also feel heavy? Is your stamina down? Does it all make sense to you? It does to me. I want to know what is being done in this country to get this going? Dr Zamboni has pioneered a procedure similar to angioplasty where he expands the diameter of the veins. He has had incredible success. However, his success has been in Italy. I would like to know if there are doctors in this country who are going to Italy to learn what Dr Zamboni is doing.

"SUFFER" from MS?

Is my MS so bad that I suffer from it? It has held me back at times. It has weighed on my psyche. Fatigue, heat, loss of balance, wonky eyes, tingling, moments in the restroom...those are all symptoms that I have. I prefer to think that I am learning to almost block them out. Sure, I stop every now and then and take inventory to see how I'm doing. But, for the last year, the symptoms have not worsened, and I have proven that I am still able to function in my business world. If people don't already know, and I don't tell them, they would not know that I have MS.

I know we all deal with our MS differently. I know our MS is different from individual to individual. Our support group's are all different. I live with my dog and no other family members. My nearest family is over 900 miles away. How do I do it, I ask myself sometimes. I am not debilitated, but knowing I have a disease that can be debilitating can have an emotional effect; which again, we all deal with in our own personal and individual way.

Lately, I have spent more time trying to do the things I want to do, whether I feel fatigued or not. I do them and I concentrate on overcoming the physical and emotional fatigue that I feel; mind over MS, I call it! I give myself a personal pat on the back for doing it and I feel joy and accomplishment. It takes pushing. Having the idea to do something is easy. Planning to do it, still easy. The last step; actually going through the front door out into the world to do whatever you have planned, that is the biggest hurdle for me. Over the last year, there have been many events I have planned for, only to stop at my front door when the time came. It was easy for me to blame it on the physical fatigue of MS, but really, it was the failure of my mind to win that battle.

I guess, I am writing this because I have been out reading other people's blogs and I read where someone said, "I suffer from MS." And, part of me wanted to disagree with that statement. But, I don't know that person. I don't know how bad it is for him. I don't know what kind of support he has. And, THAT is why I was out reading his blog. I need to go back and read more, and I will. Right now though, I am here writing and I want to finish. I started out writing this blog entry to say that we shouldn't be "suffering" from MS! The more I thought about it, the more I wrote, the more I knew that YES!, I "suffer" from MS. My life suffers. I let MS get the best of me. It is hard to not let it. I wish all my blog entries could be about how I beat my MS! But, that isn't true. There are many times it gets the best of me. I will have my victories, though. And, I guarantee I will be here sharing them when I get one! MIND OVER MS! I'm not ready to give up...

Well, this was a Saturday morning rambler...

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.

MORE OF FRITZ HADRON

And, why my blog is called:

"The End Of The World Will Have to Wait Until Next Year..."

Well, I really enjoyed writing as Fritz and the few who have read his blog entries have commented positively, so while the anniversary of my MS diagnosis is still fresh, I will unleash some more of Fritz. I hope you enjoy. Yes, some of the stories get a little risque, but it is all innuendo and the stories are as innocent as you want to make them. Enjoy!

Entry 3

What a way to kick off Oktoberfest or should I say, what we were calling the LHC Sausagefest! YES, the celebration BBQ was a rousing success.  The two Swiss Robinson twins were killer in drag and quite enthusiastic when the band played the chicken dance. And lab assistant Juanita Riley from the Bronx provided some fine entertainment on the main table. I think we may have experienced our first glimpse of what its like for a black hole to evaporate, if you know what I mean. Now there was some real honest to goodness elastic scattering and diffraction dissociation there, my friends. The forces of nature were colliding forming what the layman might call new hot dense states of matter that could only exist right after the big bang! Higgs bosons and supersymmetric particles were everywhere! BUT, I digress just a tad. An aside to the partygoing... Old Man Evans dropped the key to his Beamer during his ummm, protocol review with lab assistant Jones and we will have to depolarize the cryo magnets for the next week, so we can pry it loose. Yes, we can detect the smallest of subatomic particles in this rat-trap, but we can't do it overnight. Keep pushing the button my friends!

Entry 4

This isn’t going to SURPRISE anyone.  There are varying theories about what will happen here at the LHC, cutely named “Halo” by our jealous professionals at the Royal Society of Chemistry in London , but that is another story, AND we completely reject that name, by the way…friggin’ gamers. To get to my point and to make a long story short, we have been fending off this annoying lawsuit filed in Hawaii of all places. Anyways, I am really HUNGOVER from our Sausage festivities the other night and also quite puzzled why my knees are raw, my backside is sore and it smells of turbine oil, but again, that’s another story. I remember some really good times and the times I don’t remember, I think I want them to stay there. Let's just say I'm hanging up the Spam Waitress outfit back in the closet, pun intended.  What was I saying? OH YES, I am struggling to keep my mind on this Complaint for Temporary Restraining Order filed by Mr.’s Sancho and Wagner who have this fear that we may be more capable of accomplishing our goals than ANYONE and they have gone on record in the courts to say that we may be creating stranglets, micro black holes, magnetic monopoles and such. Poppycock! Let me say, IF the particle collisions we create were to convert into two massive particles with north and south magnetic monopoles that resulted in the catalytic decay of atoms and protons, AND caused them to convert other types of matter in a runaway reaction AND this resulted in the Earth’s poles reversing/flipping, all that means is that come this February, Punxsutawney Phil will not see his shadow and there WILL NOT be 6 more weeks of winter. Do I hear any applause?... yes, you are very welcome!  Where’s the harm! We can just blame it on global warming just like everyone else, and no one is the wiser!  We all know they have absolutely no scientific basis for THEIR “wacko” conclusions!  Based on that, I’m sure we can get this frivolous lawsuit dismissed.  Namaste, my friends!

WHY MY BLOG IS CALLED

The End of the World Will Have to Wait Until Next Year...

Right about the time I was being poked, biopsied, tapped, brain-scanned and having my wallet lifted for the doctor bills, that resulted in my MS diagnosis; I decided to pen some fiction using the pen-name of Fritz Hadron. I wrote this in the first-person, and as Fritz, I was a free-spirited lab physicist toiling in the tunnels of the Large Hadron Collider (LHC) located in Cern, Switzerland, on the border of France. Basically, the LHC had just fired up for it's initial start-up, but had encountered some serious issues with the huge electro-magnets that line the testing tunnels. I don't want to go all into the technical reasonings behind that, but at the time, there were a few "anti-progress zealots," I will call them, that were fearful that the LHC would be a world-destroyer when it was to finally fire-up successfully, causing a micro-blackhole, stranglet or some other runaway physics-experiment-gone-amok that would suck up all matter as we know it. So, being one of twisted humor and wit, I assumed the personality of Fritz Hadron, speaking to the masses in his blog from his underground lab 70 meters below the surface, informing readers that "the end of the world would have to wait until next year" as the repairs were made to the LHC. It was good therapy for me and the title-phrase I used stuck in my mind as a great phrase to describe my defiant attitude, masked in my own brand of wryness, towards MS. Today, September 10, 2009, one year after I was "officially" diagnosed with MS, I will share with you my first Fritz Hadron blog-entries. Here goes:

Entry 1

The LHC is broke...on the fritz. But, when we get it working again, even if a tiny black hole is formed, a big if, we promise it will evaporate immediately, we think...its in our report. Yes, we have never witnessed a black hole evaporating, but if our theory is correct there will be no fear of an incident. But, look on the bright side. If we can create a black hole, we can probably create a wormhole, too, and we will be able to escape the vacuous attraction of the black hole and humanity can colonize to other corners of the universe.

Entry 2

OK, all is not lost. In order to fix the wire that shorted out the electromagnet; a major embarrassment to us; we have to wait two months for the LHC to warm up from the previously super-cooled temperature below 2K. That's cold! To temper our disappointment, we have been officially recognized by Guiness Book of World Records for the world's largest refrigerator. This is an accomplishment that we are extraordinarily proud of and to celebrate we have scheduled a BBQ for all laboratory personnel. We are determined to not let the 10,000 tonnes of liquid nitrogen and 130 tonnes of superfluid helium (1% of the global annual production) to go to waste. Ten kegs of unfiltered Eichbaum Kellerbier have been placed in Sector 6/7. The first keg will be tapped at 1100 hours and partying will ensue. The theme for the BBQ is anything Monty Python, and that means men are allowed to dress in drag, so the complaints that we have received in the past about "too many guys, not enough women" should not come into play.Should be a good time for all! I'll be dressed as the Spam Waitress. See you in the tunnels!!!