Re: please help!

JHarper33(AT)aol.com
Thu, 25 Feb 1999 14:46:21 EST

Dear Jenny,

My heart goes out to you. TM is bad enough; having the doctors and those
closest to you treat you as they have is just awful.
My test results were nearly the same as yours: all the tests came back fine
except the Epstein-Barr, which showed a past exposure to that virus, and ANA
antibodies, an indicator of lupus (though they were not high enough to
indicate lupus and a later test showed they were normal again). Fortunately
the drs. who saw me were knowledgeable about TM and went by my symptoms, not
just test results, and assured me my symptoms were not all in my head. I wish
you could find drs. like that, too!
A negative test result does not necessarily mean anything. There are such
things as false positives and false negatives. Not everything shows up on
tests. There is not a test for everything. The TMA survey indicated that out
of 102 respondents, 36 had no lesions on the spine or brain at all: that's
about a third.

Would your husband -- and/or the doctors -- read some information you could
print out from the list or the TMA and TMIC web sites? Maybe that would help
them understand. Where are you located? Maybe someone on the list knows of a
more knowledgeable and compassionate neurologist in your area.

I'm so sorry your having to go through this.

Barbara H.