Wednesday, July 28, 2010

Maybe my self confidence is taking me places I shouldn't go. I don't know. Yes, I've been working out. I feel stronger, more nimble, and maybe even more attractive. My psyche has also improved, perhaps beyond where I should stop. I'm not talking in the physical sense. I'm talking the emotional, the relationship sense. I recently thought a young lady was attracted to me. I guess she was. I thought I received signals. I asked. She said yes. We went out. That should have been the first step.

Right now I am sitting here thinking it might have been the last. I have called her twice since the date and emailed her. She didn't pick up her cell. I left two very brief messages such as, "Hi! It's Paul. I'll talk to you later." I'm not good at leaving messages. Two days since my two muffed messages and email, and no return call or email. Now, I'm stuck as to what to do.

I think tomorrow I will try again, with the phone. Only this time, if she doesn't answer, my message will be more like, "Hi, this is Paul. I'm sorry for my short and seemingly detached previous messages. I suck at messages. Please call me so I can try again...." or something like that. If that doesn't work, it's onto someone new. BTW, I didn't tell her about my having MS. She didn't detect anything, I don't think. However, she knows some of my friends and she may be suspicious because I did tell her about my brain biopsy....uh-oh! Was that bad?

Tuesday, July 20, 2010

Been Running Fast and Free....

Where have I been? I must have been trying to forget about MS. Can't do that, though...go figure.

I'm okay. I am feeling good. I am trying to beat the feeling of MS by eating better and exercising. We're having a Biggest Loser Competition at work and, not expecting to win, I joined up. Really, I am not heavy, but I saw it as incentive to get on an exercise plan and firm up the middle. You see, I have this incline bench, kinda like the one that Chuck Norris pedals, but different. So, I hauled it out of my "Everything Room" and dusted it off. I knew if I left it in there, I wouldn't keep using it regularly. So, I plopped right in the middle of my living room and there it sits and calls to me every time I walk by. "Hello, Paul! Don't trip over me... why don't you stop and knock off a few curls, big boy!" it calls to me. Here it is almost midnight, and I'm sitting here sweating, typing, telling stories about my talking incline bench right after a workout.

Well, my strategy is working. I have been going at it for a good 8 weeks now. Now, I'll give you the straight scoop about my weight. Nothing to be ashamed about. Before I started, I weighed myself and I was 217 lbs. Now, this is before the Biggest Loser Competition started. I wasn't happy with that weight, so somehow I subconsciously lost 5 lbs before we started! So, I put myself at a pretty good disadvantage right at the start, because I only have so much weight I can lose. Did, I say I wasn't really serious about winning? To summarize, Week 1, I was 212.2. That's my official starting weight. This is Week 8 and I'm 205. That is a modest loss, certainly not award winning. But, if I could have held my 217 lb weight for Week 1, then we would be talking. The good news is I like it! I like the feeling of losing some stuff around the middle and I like the feeling that I am stronger at the same time. And, keep in mind, I'm 6'-3", so I'm almost getting hunky, if that is possible for me!

Okay, I'm alive, I'm okay, and I'm not as bad on the eyes as I used to be. I think I'll keep this up. I have lot's of reasons why, which I will write more about in the near future, now that I have found my blog again....wink!

Thursday, April 8, 2010

Information on CCSVI Liberation Treatment

I learn something new each day! Liberation Treatment is what they are calling the procedure that Dr. Zamboni has pioneered to treat MS patients who are also diagnosed with CCSVI. And, here is a link to a website that has names of surgeons that are performing it! It was just a couple days ago that I applied for the BNAC study and decided to track down surgeons that could perform this procedure. Now I know what the name of it is. It is Liberation Treatment! Also, when you go to that website, you will see they have information on a clinical trial in Albany, NY. I am signing up for that, too!

Tuesday, April 6, 2010

National MS Society - Encouragement or Discouragement?

What kind of support are we people with physician-diagnosed MS and possible undiagnosed CCSVI getting from the National MS Society? I have a personal experience. I recently went to the National MS Society website to view their FAQs regarding CCSVI (link here). I encourage you to go there and read it to get your own take on the subject. What I got from it was the NMSS doesn't deny that there may be something to recent news and developments regarding CCSVI, but they sure don't come close to endorsing it. They say they are openly looking to provide grants for research, but they don't disclose how much. There is a lot they don't tell us, but it is clear that they do tell us to not jump on the bandwagon. I'm sorry, but I can't do that. One of the positives from the NMSS was a link to the Buffalo Neuroimaging Analysis Center (link here) where they are starting a Combined Transcranial and Extracranial Venous Doppler (CTEVD) Evaluation study. I have submitted my application for this study and await their further communication to see if I will be accepted. You should check that link out, also.

The NMSS calls Dr. Zamboni's procedure for clearing vascular blockages "experimental endovascular surgery." Stories have been spread, reportedly from the NMSS, that MS/CCSVI patients should not travel to Poland or other countries to undergo Dr. Zamboni's procedure for CCSVI because Poland is a third world country, or because many people have died as a result of undergoing this procedure. There are varying degrees of responses to this. Here is a story by Ginger, an MS Blogger who went to Poland to have the CCSVI procedure. I encourage you to read it. But, please, read Ginger's entire blog. She is spitting mad at all the MS Societies.Her blog goes more fully into some of the events she has experienced that relate to the Canadian MS Society. But really, all the MS Societies are related, as you will see when you go to the NMSS website and read how they are all pooling their thoughts on how to deal with CCSVI.

My recent experience? I just want to get the names of some surgeons in the Houston, TX area who may be skilled or have an interest in the CCSVI procedure. I am not looking for a recommendation and I clearly stated that in my correspondence. The NMSS replied that they would not give me any names of surgeons and suggested that I contact my neurologist to discuss that subject. I suppose I will do that. I just thought the NMSS would be more proactive and supportive. My bad.

So, long story short...I have been talking about CCSVI and wondering aloud on my blog what I should do, writing about it and wondering what others are doing. I am now doing. I hope to get in on the Buffalo experience. Next, I want to find a vascular surgeon in Houston, TX who is on the leading edge of this thing. I wonder what the NMSS would say about that...

Friday, March 26, 2010

Medicinal Marijuana for Multiple Sclerosis?

Where do I go with this subject?

Have you heard about the New Jersey man who was just convicted and sentenced to jail time for growing marijuana in his backyard? This isn't a joke, so there is no punchline. This really happened.

Now, I don't know if marijuana makes life better when you have MS. I do know it is illegal in most states. New Jersey was one but is no longer. At first look, I can see some things I don't agree with in this case and I have no legal reasoning behind my thoughts. It's just an opinion. The man wasn't allowed throughout the court proceedings to state that the reason he grew the marijuana was for his personal use to treat his MS. I don't agree with that. So the end result is that this man leaves his wife and child and serves a three year prison term. In the article, you will see that he said he resorted to the use of marijuana because he couldn't afford MS treatments because of the cost.

This an opportunity for me to say to anyone reading this that Betaplus, the distributor of Betaseron currently charges $0 per monthly supply for Betaseron, regardless if you have insurance or not. That is a fact. I know because that is what I pay. But, that is not the point. Actually, based on what I just stated, I would have made a good witness for the prosecution.

No, the short story here is really many stories. Let me list a few that come to me here. (1) A man with MS felt that he had to disobey the law in order to improve his condition and he will now spend three years in jail for that. (2) A man with MS thought there weren't inexpensive conventional medications out there to treat MS and there are. (3) A man who was using an unconventional medication to treat his MS will now get all the free conventional medication for MS that the state of New Jersey can afford, in jail. (4) Marijuana is not considered medication in many places in the US. (5) Medical marijuana is now legal in New Jersey although the passing of that bill came too late for this man. (6) Why can't the Governor of New Jersey now commute this man's sentence and release him now that medicinal marijuana is legal in New Jersey...especially since that man wasn't even allowed to say why he used it in the court proceedings?

Seems like a slam-dunk case to me....

Monday, March 22, 2010

Brass and Ivory: Talking to Your Doctor



Our friend Lisa Emrich, who is probably the greatest MS blogger ever continually keeps us informed on all developments regarding MS. She is busily blogging 25 hours a day! You know her from her Brass and Ivory blog and Carnival of MS Bloggers blog, and I probably left some out. You can find her down on my "Proof That I'm Not Alone" sidebar. Anyways, I am providing a link to a blogpost she made recently regarding Talking to Your Doctor. Here's the link:
Brass and Ivory: Talking to Your Doctor

So, to explain, I don't like my MS doctor and I have been intending to switch doctors for the longest time. But I haven't and I blame it on me. Long story short, I need to get off my butt and either schedule a visit with my doctor or get a new one soon. Lisa gives us some very valuable tips in the linked blogpost, above, on how to prepare for your next doctor visit. Plus she has a video to help you do it! I'm making my list now.... Thank you, Lisa!

Saturday, March 20, 2010

MS Blog Aware

If my last blog entry made it sound like I was living in my own little world, and a bit despaired to say the least, then I think this story will put some light on the subject. I started this blog for a number of reasons. One was for my own personal form of therapy. Having the opportunity to put my thoughts into words, I have to admit, had it's appeal. I also, saw an opportunity to communicate in some way with other people who were feeling the same way as me, physically and mentally. And, I wasn't sure that I was doing that, because, while people visited, they never commented. I thought visitors were coming and leaving, never to return. Plus, this being my birthday and being alone, I guess I was definitely looking for some communication. Well...after what just happened, what a fool I feel like, but if I don't communicate this story, I would be fooling myself even more.

I was talking to my wonderful friend Gloria. She was trying to cheer me up and I was talking about how no one ever leaves me comments. She said, "I tried to leave you a comment, but it won't let me!" So, she tried, and she was unable to figure it out, so I went into the settings and I saw this thing about emailing me when I get a comment. So, I entered my email address and saved the settings. Wouldn't you know, I start getting emails and there's about 20 comments waiting for my approval! I couldn't believe it! So, I approved them all and what a gift on my birthday! This has really made my birthday special!

So, thank you to my friends! Thank you, all!

Cheer Up, MS Has Me on My Birthday...

When I was told that I had MS...let's see who told me, I think it was my parents who told me, or the nurse...kind of foggy on that. I wasn't really expecting it. I was expecting news of a different sort. It could have been the doctor. Yes, it was probably the doctor. Or my parents. I guess it will remain a mystery.

Why can I not remember? Because I was in the hospital for a brain biopsy and being in a drug induced haze while losing a part of my gray matter might have had an effect on my memory? The doctors looked at my MRI and thought brain cancer. I had no fewer than three neurologists from three different institutions look at my MRI and they all said the same thing. You need a biopsy. None of them ever suggested MS and getting a spinal tap done. I call it a spinal tap. Neurologists like to call it a lumbar puncture...probably because of the negative connotation of saying - spinal tap, as if calling it a lumbar puncture is supposed to sound so innocuous and make you feel at ease about it. But, eventually I went through that procedure, too, and believe me, it is not pleasant, so spinal tap, it is.

So, back to the brain biopsy. I can always recount the details of my spinal tap some other day. The day of my brain biopsy was the first time someone suggested MS. It wasn't cancer. Yippee! It was only MS! So, instead of six months of rapidly declining health followed by certain death, I had an indeterminate amount of time to contemplate how it would all end as my health slowly but surely declined at a rate slightly quicker than old age.

So, today I write. Am I cheering you up any?

Today is my birthday and I will spend it by myself. I have no loved one in my life. I have a dog, who appreciates that I feed her and pet her and keep her warm at night. That is not wasted on me. But, I will go though this day and no one will give me a hug. A phone call will have to suffice.

Having MS has held me back. I am lacking the self-confidence to start a relationship with anyone. Not knowing if sometime in the next year I will become wheelchair bound is a hindrance to me. There are other reasons, too, but MS is such a convenient excuse for me. If I don't want to do something, anything, its the MS. I don't treat people badly, don't get me wrong. MS just makes it is just so easy to take the out.

So here I am, by myself. Me and my blog. Talking to talk. Writing to write. I suppose I could put on my happy face and tell you how nice the sun is this morning. But, I would by lying and what is the sense in writing in a blog if you aren't telling the truth? I could say its the MS and I wouldn't be fibbing at all, but surely that isn't everything. I'm feeling alone today. Its just me and my MS coming to you. I am such a liar!

Aren't you glad you stopped by?

Say Happy Birthday, Paul.....

Tuesday, March 16, 2010

Everyone is doing something about MS and CCSVI

Look around you! People are acting and reacting! It makes so much sense that there is a link between MS and CCSVI.

Some are taking the leap and starting to receive CCSVI treatment for symptoms that are shared with MS. Here's someone who can't get the treatment in Britain, so he travels to Poland to get it. Here's a woman, also from Britain who has gone to Poland for the CCSVI treatment and received positive results. Another person with MS/CCSVI symptoms from Canada is traveling to India for CCSVI treatment.

Meanwhile, people with MS are out there advocating. Here is an excerpt from a typical comment regarding an MS/CCSVI article,

"I am going to Buffalo, N.Y., to participate in the research conducted by Dr. Robert Zivadinov. While I have not been chosen to participate in one of the clinical trials, Zivadinov has opened his clinic doors to people around the world suffering with MS to be tested and potentially diagnosed with CCSVI.
I will not let our government, our doctors or the MS Society tell me to "wait and see." Life is just too short to "wait and see."

To others with MS, I suggest you sign up for the diagnostic tests in Buffalo. Raise the money for these tests as I am, through various fundraisers and donations. We need to come together and work with one another to advocate and to actively get tested for CCSVI. This research just could be the answer to our prayers."

I think those are inspirational words.

But all is not well, as some that have received the treatment in the US have not fared well, with one patient having died.

So do you have MS? Does someone you know have MS? Is time on your side?

What are you doing? Are you a doubter? Are you a believer? Are you a wait-and-seer?

Monday, March 8, 2010

Nobody Knows What MS Is Week??? March 8-14

Folks, can I have your attention for a moment?. This is coming from me and not some clinical physician who receives grants to run tests on patients with MS; not from some pharmaceutical company that profits from selling drugs to patients with MS; this is me, a person with MS. Okay? Read on, please...

Let me just say, thank you to the National MS Society; an organization that is made up of concerned people who really want to figure this whole MS thing out. That being said, it is important to me to try to make society aware that MS is still not an explained illness! Look over on the left side of my blog and you will see the history of MS. The medical definition of MS has changed, but it is clear to me that, what it is, has not changed. So guess what? That is my message to anyone and everyone who reads my blog. Nobody knows what MS is. I am stating very clearly, right now, MS is still not understood! If that is what MS Awareness Week is about, then that is the first step in figuring the whole MS-thing out. We have to fathom that fact. Nobody knows what MS is! Nobody knows what causes MS! Nobody knows how to cure MS! After all these years and all this research and all this money that has been raised and all this money that has been spent; nobody knows what MS is! That is a fact!

So, what are you going to do during MS Awareness Week? Certainly not celebrate. Become more aware? While you're becoming more aware, remember that nobody knows what MS is. Instead of calling it MS Awareness Week, I think we should call it Nobody Knows What MS Is Week!!! With three exclamation points.... MS Awareness Week just doesn't do it for me.

Thank you for reading.

Friday, March 5, 2010

More Than Half of MS Patients in Study show CCSVI-type Blockages!

Using Doppler Ultrasound, doctors at the University of Buffalo detected narrowing of the veins in the extracranial area (outside the skull) of MS patients that they tested. This study is unpublished but was brought to the public because of the high prevalence of the results. Dr. Robert Zivadinov, the principal investigator, claimed that people should have "cautious optimism" that these significant findings will aid in the ongoing research in linking multiple sclerosis with CCSVI. I am ecstatic to hear that this research is being done and patiently waiting for when the medical community can go forward with making the link official and developing useful and common procedures for us all.

Wednesday, March 3, 2010

There are Risks to CCSVI Treatment

This is the first I have heard of it, but it appears that the treatment that Dr Zamboni has pioneered to treat MS/CCSVI has not been perfected by others. Evidently, doctors at Stanford Medical Center were performing the treatment, which involves stenting the jugular veins in an attempt to increase the blood flow from the brain, ended badly for two patients. At this time, Stanford Medical Center has ceased performing the procedure.

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.

Saturday, February 20, 2010

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.

Thursday, February 18, 2010

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.