MS Update (aka I [still] have a heart)

by Michael S. Kaplan, published on 2010/05/02 06:01 -04:00, original URI:

This is not a blog about Microsoft, it is a Multiple Sclerosis blog. If not interesting to you, please skip....

I get periodically asked about what's up with the MS, by people talking about the disease not the software company.

Well, let's see....

Just the other day, more than three years after I stopped taking Novantrone (as I mentioned in Driving myself to a vacation from napalm), I got a call from Valerie. She works in my neurologist's office.

This is never a good sign -- because although she is as nice person if she is calling then it usually means something not nice is going on.

My theory here was once again proven.

It turns out that they changed the protocol for Novantrone takers after some studies came out that showed the cumulative chance of getting Acute Myelogenous Leukemia (AML) was 1.1 after five years and 1.6% after ten years. Basically they want to check the Left Ventricular Ejection Fraction to make sure it is > 50% and a liver function panel to make sure white cells and other things don't suggest an AML occurrence. The suggestion is now blood-work for five years after you stop taking Novantrone and the LVEF check for life.

So I went to get the test done and snuck a peek at the results - I appear to be at 65%, so it looks like there are no problems.

I suppose this is going to perhaps be an annual thing from now on.

As with most things, the cost of Novantrone is not so much in the initial investment; it is in the upkeep. And it is much easier as a chemotherapy drug (where you are not expected to live long enough to have problems from the drug itself) than as an MS treatment (where you very well might).

Okay, so far so good, though.

In other news....

I renewed my lease in Redmond, though only for six months, and I only did that to lock in a particularly low rate; my innate desire to be somewhere that allows me to go out where I want at night and not have to be home by midnight will lead me to either give up on the "no car, independent of foreign oil" thing that I am otherwise loving, or else move to the city, which is where I am spending most of my time anyway. Perhaps not so much Capitol Hill anymore, but there are interesting places that can handle the iBot well in Pioneer Square and Belltown.

In in still other news, the Ampyra quest continues; although insurance will pay for it, no pharmacies are stocking it yet. So I am working (again with Valarie!) to get the forms filled out to get it right from the company, directly. they have a whole unit set up to make sure insurance companies will pay and so on; I assume my case will be a welcome relief for them compared to the people without coverage.

So the net of these last two things? I am still alive (though have an extra annual cause of concern beyond the fear of being eaten by a bear), and still imbalanced (though there may eventually be an 80% chance that it might improve).

And it looks like the India trip is still a go -- and after some quick emails to colleagues and friends it looks like I might be doing other stuff while I am there. The price for people to get a piece of me? Pretty much transportation. This is pretty cheap and unlavish as demands go, which makes me possibly even more attractive as a speaker or trainer or person to meet with people or person to assess stuff.

This is the kind of thing I really enjoy, and what I miss most about my life before going full-time at Microsoft and to some extent my life for the first few years of being full-time there. Talking to partners and customers and government people and even standards people really rocks, even moreso when I have useful information to contribute to the interaction. :-)

To get back on-topic for this blog, I am very excited and only a little bit nervous about the iBot in India. But I am ready, in any case. This will be a good test of what can be done while in an iBot, actually. And a pass/fail test, which I always thought was easier.

As I said, I'll keep you posted on things as they get figured out.

As an interesting aside, the number of iBots in the greater Seattle area had been under-reported previously: there are actually seven others besides me who have had service done in the area (it is easier to get such answers when one tech does all the service!). I am still (by his report) the most outrageous in terms of what I do in the chair. but doesn't that sound like me?

Back even more on-topic, the MS thing kind of changes what my future looks like.

I mean, professionally I am unlikely to work for another company unless insurance coverage is both available and comparable. This is above and beyond the usual criteria about fabulousness of opportunity and such (I've been turning down offers that aren't fabulous from my point of view for year now anyway). This is nothing new, though MS has set the bar pretty high in that regard.

And personally, the visible signs of MS in general and the iBot in particular have shifted personal interactions a lot (obviously). The jury is still out about whether it is better or not, so far it seems like more of a lateral move when one tallies up all of the ups and downs. But I think shaking up the status quo there can be useful from time to time, for one very simple reason: the individual members of the set of women I have dated are so different from each other that eventually the only way I'll be able to keep that record is to be doing things differently!

Otherwise the whole MS thing appears to be pretty stable, allowing for all of the above, of course.

Though things are set up to perhaps be very different over the next few months....

John Cowan on 2 May 2010 9:42 PM:

There's always the option of moving to NYC.

What do you do to find out if the insurance is compatible?  I never can get any details about insurance out of HR departments: all they know is who the carrier is, not the exact details of the group policy.  (Of course, there's *never* any knowing what an insurance company will cover until they've turned you down for something: my current one will bizarrely only let me have 1 box (about 5 days) of slow-acting insulin at a time, even though my prescription is supposed to be for 6 boxes a month, so I'm mostly tied to a pharmacy.  They're not saving any money with this folly, as far as I can tell; it's just mindless That's Our Policy, Sir.

Michael S. Kaplan on 2 May 2010 10:52 PM:

I have my ways about finding out about insurance coverage. Methods that are sneaky and underhanded but not illegal or unethical. :-)

How would moving to NYC help exactly?

Michael S. Kaplan on 2 May 2010 11:03 PM:

For diabetes, you can often fight the insurance company to enforce sanity -- you may need to spend some time looking at the rules but it is amazing how much leeway they have in appeals against dumb poilicies!

John Cowan on 26 Nov 2010 1:53 PM:

Well, while the subways are still pretty much inaccessible (partly because all modernization money is earmarked for wheelchair users, with zip just to improve stairs, which would make things more accessible for 99.9%), the streets are universally accessible, so if you stay above ground you can go where you please.  That's a side effect of being a pedestrian city.

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