Men, too.  One doctor diagnosed me with porphyria, after talking
with me for less than ten minutes.  Her only question was the exact
type of porphyria I had.  She stuck to her misdiagnosis even after
the test results came back negative--she said that negative results
weren't always conclusive.  Meanwhile I did all the research
I could, including a lot of Internet searches, and I couldn't decide
if the diagnosis was right or wrong.

The next doctor I saw was an expert in porphyria.  He decided
that I was delusional, because "the patient diagnosed himself over
the Internet."  No mention of the other doctor, who just happened
to work at the same university hospital as he did.

--Bill Thompson

Zuska,
Oh my dear. What a terrible time you have had. I feel for you and send
lots of hugs and "Positive Thoughts."
I am also on Plaquinal but every time I report something like this to
my Rheumie, he just says, "Oh I wish you women would stay off the
Internet! You talk yourselves into most of these situations!"
I have also been having feeling a progressive weakness in my thigh
muscles. My partner and I like to go for a walk at least once a day but
I have been feeling a lot of pain in my thighs the further I walk.
Then, at night, the pain in my thighs wakes me up. I thought it was
just my Lupus getting worse or the change of climate. (We have have
just moved from Alice Springs in Central Australia, where it is hot or
warm all the time, now we are living in Adelaide where it is winter and
I feel the cold a lot.)
I don't know wether to mention it to my Dr. or just wait and see if it
gets any worse.
Anyway, try to keep your chin up and please let us know how you get on.
Diane