Here are some interesting new drugs up for FDA approval.

• Cladribine
• Ampyra (already on the market)
• Fingolimod
• Laquinimod

• Teriflunomide

  • Clinical Trial - Phase III clinical trial currently recruiting participants

• BG-12

Nevermind. I saw my doctor this week, and she told me that it is way too soon to draw any solid conclusions about the theory presented in that last link. She also said that a lot of the parameters and baselines the physician used were not really good barometers for measuring the way MS manifests itself in the brain. I guess blood/brain theories come around every 15-20 years. She has been in the field since the early 70s. Apparently, MS is like anything else, ideas, treatments, trends are cyclical. She also mentioned that the Italians are pretty intrepid in their blind plunge into that which they have absolutely no clue. 1/4 Italian myself, I found her insight to be fairly accurate.

So, I guess the bottom line is don't get your hopes up. I'm not sure which one, but a top neurologist in the field was quoted as saying that MS is not a sprint, it's a marathon. Meaning there are no fast answers. You have to be patient and give things time to work. An idea completely foreign to me. Patience is antithetical to my basic personality structure. I really picked the wrong disease.

So, since nothing else has seemed to work I am now trying IVIG, intravenous immune globulin. It is a solution that contains the IGG antibody. The theory is that it may bond to the antibody that triggers the autoimmune response thus rendering it inert. It is also suspected to reduce inflammation. The third potentiality is that it may suppress immune system activity. All of this is a long-winded way of saying let's try a Hail Mary pass. Clinical trials conducted in the states did not report any measurable benefit to those with secondary progressive MS. However, trials in Europe do indicate moderate gain in secondary progressive patients. This is again a treatment whose popularity swells and ebbs with the times. It is also extremely expensive. It is estimated to cost about $100 a gram. I got a jumpstart of 150 g with a maintenance dose of 77 g a month. Insurance companies love me. The upside is it is not a toxic drug, like Novantrone or methotrexate. I don't have to worry about heart failure or some other unforeseen weird contraindication, like drinking orange juice and taking hydrocodone causing a grand mal seizure. (Which might be kind of fun.)

We'll see. I've been on so many different treatments, it is starting to be schizophrenically amusing. I kind of like that it's so off the charts expensive. This month I am more interested in screwing over my insurance company. Maybe next month I'll work on the pharmaceutical industry. Although, that's going to be a much harder nut to crack.

Study could hold key to MS treatment

I'm going to spend the next few weeks talking about the various challenges I encounter and the steps I take to overcome them. This week it's going to be clutter. I used to be a consummate neat freak. I can't stand mess. I call myself the anti-packrat. If I've had something for more than several months and I've never used it, it goes in the trash, even if it is opened. I know it's wasteful, I just can't handle having things around that have no purpose. It's a pretty controversial philosophy considering most people can't stand to throw away even the smallest item that may at some point in the future have even the remotest chance of being useful. People have closets full of old shoe boxes in case, what? They might need to make a hundred dioramas at some point? In a shoe packing emergency you can shave valuable seconds off your time, true. But is that potential really worth all the wasted space? If something breaks, like a toaster oven, and you buy a new one, throw the old one out. Trust me. There is never going to be a toaster oven shortage in the future where you will need to hoard spare toaster oven parts. Your clothes don't fit you anymore from three years ago? Give them to Goodwill. Facing the truth is hard, but even if you do happen to fit into them at some point in the distant future can you really imagine wearing a peasant blouse from 2002 ten years from now? Bite the bullet. Go into your closets and pull out the stirrup pants, acid wash jeans, old stained Keds and get rid of them. You will never wear them again. (You also might consider getting rid of some of the newer clothing you have that is too hard to wear anymore. Those jeans that you love but you just can't button because your fingers won't work are not going to get any easier to wear. That's a harder fact to face, I know. But you're going to have to address it at some point.)

So I guess I am one step ahead of most people. I don't have too many things to get cluttered. Yet it still happens. A lot of my clutter is things left open, un-capped and strewn about my desk. Like pills. The only reason I haven't OD’d on the wrong thing is because I know what each medication looks like. You would need a detailed map and a good book on pharmacopeia to navigate my desk top. Once the pills are out on their bottles it is an almost insurmountable feat trying to get each one back in. You don't even want to hear about the times I have gotten every pill back in the bottle only to tip the thing over on the floor. I have a lot of incongruous items in my room because once I spend 10 minutes trying to open the package of beef jerky I'll be damned if I'll going to use up the rest of the energy going back to the kitchen and finding the appropriate place on the appropriate shelf to put it away. So it just sits there on my desk taking up space and making a mess. I can't fold my clothes so they usually just sit in a wrinkled mess in my laundry basket. I hate living like that. I need more order. It might be anal, but I always feel so much more clearheaded when things around me are neat and tidy.

There are actually some pretty good solutions to these problems. What you should do is make a list of everything that causes clutter and just tackle them one by one. Let's use clothing as an example. If you find your room is more and more cluttered with clothes to fold or put away, try to think (and I hate this saying) outside the box. What I've done and separated my shirts from my pants from my PJs from my towels and put them all into separate plastic bins so that I can just grab whatever I need from the appropriate bin. Another good idea is to put a bunch of hooks on the wall so that you can just hang your pants up; you don't have to fold them or use a hanger.

If you routinely get things out of the kitchen and have trouble bringing them back one at a time have a basket that you can put everything in when you're done using it and make one trip back to the kitchen. Have a garbage can in your room or near where you usually are so you can throw things away right then and there and not wait till they accumulate and start growing things. Things like makeup often come in containers that are difficult to open and close. Many places sell small receptacles that are easy to open. You might think about transferring your smaller items to different containers. If it's too much of a pain in the ass to open and close those childproof caps and thereby leaving your medication open to the elements, ask the pharmacy to put on regular caps instead of childproof ones. They will do it no problem.

There are many solutions to problems you may have thought you just had to live with. An occupational therapist is a good resource to go to for answers to these questions. You can also try looking around online. The Container Store has a lot of good receptacles and solutions to organizing your rooms. You might get some good ideas just by looking around the storage and organization section of your local Target or Kmart.

The bottom line is you don't have to just settle for living in a mess. There are always ways to straighten up, many of them quite inventive. Believe me, living in a clean environment goes a long way to improving your state of mind. There's some stupid saying about a clean area fostering a clean mind or some other such silly platitude. There is some truth to it, however, otherwise I guess it wouldn't have been a platitude in the first place….