My diagnosis in review

Lately friends I used to work with or go to school with are contacting me after finding me on LinkedIn, little blasts from my past. And I started thinking about my life ten, even twenty, years ago. Would I have done anything more or differently if I had known for sure that my health would decline?

I was working as a waitress when I was diagnosed in 1991. I did yoga, got a motorcycle and kept my beat-up Converse high-tops with the idea that if I became wheelchair-bound I would at least wear them to show I used to walk.

As it became apparent that I wasn't going to be immediately crippled, I threw out the shoes and continued pursuing my love of libraries. I got my advanced degree in Library and Information Science in 1999. Always I was ruefully aware that my deterioration was a possibility but it didn't seem likely. I looked and felt fine.

When I first moved here in 2001, I used to walk several blocks down to the ocean with friends and to a nearby coffee-shop on the weekends. Very soon, I started to need a nap when I got home, that even the slight uphill trek back to my house tired me out. And that was only seven years ago. I couldn't do it at all now.

It's hard to know how to tell people that my walking has deteriorated so much, that I need a scooter to visit a farmers' or flea market. But I don't think I would've done anything differently, maybe just been more aware and appreciative of the things I was able to do at the time.

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Advice to the newly reclassified


I personally think the only reason the doctors differentiate between
“types” of M.S. is to give the patient an idea of what is appropriate
to expect. But because of that, there are drugs that are only approved
for one “type” of M.S. so if a doctor wants you to try one you must
be classified as that type. And it really is such an individual, unique
disease: tell J. not to let the label dictate what she is or isn’t
experiencing.


This is a description from an MS Society booklet called “Managing
Progressive MS” that you can download for free at http://www.nationalmssociety.org/download.aspx?id=314


“Progressive MS manifests itself differently in everyone. Whether
your MS is “secondary-progressive” which followed a period of
“relapsing-remitting” MS or “primary-progressive” meaning it has been slowly
progressive from the beginning, it is important to realize that “progressive”
does not necessarily mean severe disability. But it does mean that there are
few or no relapses, and few or no recovery or remission periods when major
symptoms abate.”


Also see http://www.nationalmssociety.org/living-with-multiple-sclerosis/living-with-advanced-ms/index.aspx


With Tysabri (what you called “the chemo”), tell J. not to worry
about the “multifocal leukoencephalopathy” (PML) at this point.
It has been reported in only a few cases and always with people who were
currently taking other immunosuppressants as well. The National Library
of Medicine reports that “there is not enough information to tell whether
using it alone also increases this risk” and that is because it hasn’t
happened.

The Multiple Sclerosis Quarterly Review, published by the United
Spinal Association and the Consortium of Multiple Sclerosis Centers, reports
that there have recently been reports of liver dysfunction and two cases of
malignant melanoma associated with its use. But it also reminds us that although there continue
to be safety concerns, it is still “the most effective FDA-approved drug
for treating” M.S. Tell her to have
her liver enzymes checked with regular blood tests.


I got Tysabri once when it was first approved and was tired but fine (I always
think that except for this “pesky M.S.” our immune systems are
superstars). But the following Monday it had been pulled from the market
because of the initial PML discoveries. In the meantime I had an MRI and
there was little change so my doctor decided not to resume it for me when it
came back on the market. The bottom line is that there are both risks and
benefits to all drugs and also that chemotherapies tend to have less side
effects in recent times.It has really
helped some people.


Also, I can totally relate to being too proud to ask for help. When OH
was in the hospital and I was spiraling downhill, I was finally able to ask my
mom for help. She was so pleased to be able to do something,
so I think it might help J. to ask if she knows how helpless you feel and don’t
know unless she tells you what you can do that she would really
appreciate. My mom washed, folded and put away laundry, washed dishes,
scrubbed the shower and cooked meals for my freezer for months.


Learning to ask for help is one of the lessons this disease is trying to teach
me.

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