What a day this has been ~ not sure if it will end up as a good one or
not. Time will tell.

For three months, I have become progressively weak, to the point that I
now cannot walk without either crutches or a walker. In June I began
medical leave from work, and the doctors (lots of them!) have been
trying to figure out what the heck is going on.

The first official 'guess' was CIDP. That lead to an EMG with NCS. The
results of that were nor normal, but it was determined that I do not
have CIPD, and instead probably have Multifocal Motor Neuropathy. To
determine if that was correct, I had to have genetic testing, and wait
five weeks for the results.

Today I went to see a new neurologist, who specializes in MMN, and he
says that is not it. His 'guess' is a muscle wasting disease, such as
Myasthenia Gravis. He ordered more blood tests, and a consult with yet
another neurologist, who specializes in muscle wasting diseases.

Since I have had ALOT of time to think, I have been trying to figure
out what the heck is going on, and the only "change" in my life about
the time that this 'hit the fan' was that I started taking Plaquanil
... so I asked if this might be connected. His response was that it was
an excellent question, and that he would talk with my Rheumatologist.

About two hours later, my Rheumatologist called, told me she had a
wonderful conversation with the Neurologist and that he was thinking
this might be a reaction to the Plaquanil. She suggested that I stop
taking it and see what happens, because otherwise, the next step is a
muscle biopsy, and if we can figure out what is happening without all
these invasive tests, that would be a good thing. I agreed, and as of
this evening, I am no longer taking Plaquanil. I will see the
Rheumatologist on 8/1/06 and the new Neurologist on 8/9/06.

Now ~ mind you I am not angry that this possibility was thought of by
me, and the Rheumatologist was thinking that it was a recommendation
from the Neurologist. What I am beside myself about is that all of this
could have been avoided if the Rheumatologist's staff had listened to
me back in April when I was beginning to have problems, and was unable
to get through to her!

As a result of all this, I am on medical leave from my job. My job is
only protected until the day after Labor day, if it is the Plaquanil ~
although I will regain use of my arms and legs, it is going to take
physical therapy for months to regain what I have lost in muscle mass
and strength. And, as I have worked very hard mentally and emotionally
to accept that I would not be able to return to work, now this is up in
the air!

So, here I sit, with nothing to do but wonder what is going on ...
should I go ahead with applying for Social Security disability, should
I let my work know that maybe I will be back, how do I get emotionally
ready for both possibilities at the same time ~ or how do I find a way
to live in this 'gray area' until something is decided.

Anyway ~ that was my day ... hope everyone else had a better one!

Susan