The BS of my MS

I was diagnosed with Multiple Sclerosis April 11, 2006. It was a fairly quick diagnosis and there are days/weeks I can mostly ignore it. For those days I can't, this blog documents my journey.

Wednesday, February 28, 2007

Brad and I are walking in the 2007 MS Walk. As most of you know, I was diagnosed with Multiple Sclerosis in April 2006. There is no known cause and no known cure. Because I am hopeful of what the future holds, I want to be an advocate in helping fund research and programs for people with MS.

By following the above link, you can read about MS, how it has affected me personally, and make a donation to sponsor me as I walk in May.

Also, if you are interested in joining my team--Heat Wave--let me know. I'll get more details on that as I get them.

Please consider a donation, no matter how small. Every dollar matters!

Thanks for your consideration!

Saturday, February 24, 2007

I am going to make a request. This is not to be mean or nasty, but simply a request that I hope others will respect.

Please do not link to my blog on other sites, particularly message boards. I don't mind "blog rolls" as it's part of an online community with MS. But please don't send a large group of people my way to observe what I am saying about certain things. Justified or not, it leaves me feeling like a sideshow act. I know that by blogging I am making my thoughts and experiences public. But as a courtesy, please ask before using my posts outside of your personal blog.

I know that there are a lot of issues surrounding MS--treatment decisions, sometimes embarrassing symptoms, the way it affects one's personal and professional life. And I know that by writing on a blog I am putting my own experiences out there. I would just ask that those are not exploited. I write here for personal documentation and support. If it helps others along the way, that's great. And I am glad I have some readers, if I still do that is. I have found the comments I have received encouraging, helpful and supportive. But I hope people are reading and commenting because they are supportive, not because of another motive.

In the past, I have received comments regarding message boards, vitamins and supplements, and the like. I have deleted those comments, because they seemed more like advertisements than anything else.

I am not attempting to personally attack anyone or cause drama. I just ask that my comfort level be respected. Thank you.

Thursday, February 22, 2007

I have a site counter that lets me see who is visiting my blog and how they got here. Recently, I noticed that a rather large number of people who are investors in Elan have made their way over to my blog, and it is largely due to someone who refered them to one of my posts.

I understand that we invest in those things in which we believe. But I also feel a bit deceived. For someone to link my blog to a bunch of Elan investors makes me feel as if my interest is not what you had in mind; it seems as if your pay out was your motivating factor. Regardless of how encouraging and hopeful you are, your words seem a bit less-than-meaningful. It's called conflict of interest. It's kind of like when a doctor prescribes the medicine in which the drug rep gives the best incentives. This is particularly annoying in that I asked some questions that would have let you disclose this particular aspect of your interest, and yet you didn't.

I welcome everyone to read this site. But if your only comments are going to be advertisements for a certain drug in which you have financial interest in, then I would ask you to refrain from those comments. Medical care is more than statistical data. There are other things to consider than the two-year track record. There are emotional costs of considering a new treatment. There are social costs of time lost for infusions and the fear and concern that faces you and friends and family. It's not about statistics. And it's not about money.

End "rant."

Tuesday, February 20, 2007

Today, out of the blue, I noticed my pinky toe on my left foot and maybe the toe next to it are numb. This was the first noticeable sign of MS, that I passed off as a pinched nerve. It had gone away, and now it's back.

It's frustrating. It just makes me wonder what the medicine I am on--Rebif--is doing. I have had several distinct, albeit minor, episodes where a symptom appears, such as tingling and numbness, etc. Maybe my neuro is right--Rebif isn't working for me.

I think I have decided to go the Tysabri route, pending I can fund it. I'm pretty go-get-'em so I am optimistic. I need to set up my meeting with the neuro, but need to find a time when Brad can come along, since the neuro said that would be a good idea. I am thinking in the next couple of weeks.

Here's to hoping it ends with a numb toe and doesn't turn into anything else.

Thursday, February 08, 2007

Today, I had my neuro appointment to talk about my MRI. I wanted to be able to see the lesions and talk to him without seeming rushed. I like him a lot, but he's kind of intense, and the phone doesn't help that.

We went through why the CRABs wouldn't work, and I understand that basically if Rebif isn't working, the others likely won't either. I also asked him why he was not suggesting Novantrone, stressing that I wasn't interested, but wanted to be able to answer that question. He was like, "No, no, no! That's toxic! It's chemotherapy!" I understand; I wasn't interested. I just wanted to know why he wasn't interested.

A weird thing is having to consider how long I have to be off a medicine before I have a baby. Brad and I aren't in any position to have a baby now, but I wanted to know the "wash out" period. He suggested three months.

As for a second opinion, I have come to decide it's unnecessary. So, what if doctor #2 disagrees with my current neuro? Then I am stuck with 2 combatting opinions, and why would the new doctor's opinion be so much more valid? Plus, there's the time getting into a new doctor--as a new patient that takes time. It just seems like a hassle and unnecessary.

So, I am going to talk to my husband about Tysabri. The whole risk of PML doesn't scare me, really. I mean, with birth control, there is the risk of blood clots, but I still take them and have for about three years. And while my doctor acknowledges the risks associated with Tysabri, he seems to think they are rare enough; he feels comfortable prescribing the drug.

If I do decide to switch, the next step will be to make an appointment to fill out the paper work and go over the risks. Then, I have to figure out how to afford it, seeing as my insurance requires me to pay the whole cost up front and be reimbursed 80% (I have met my deductible already for the year.) Biogen said that once my application is received, we can talk about options to pay for it, so hopefully there are some resources. Then, of course, there are the hospital costs associated with the infusion. Ugh! I hate this part of the process.

So, that's where I am sitting right now. Just wanted to update you.