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.