Neurofibramatosis: Making a diagnosis

arraton at arraton at
Wed Mar 26 19:46:06 EST 1997


I am 40 years old and have suffered from bouts of vertigo and
depression from the age of 16. within the last ten years I started to
have narcolepsy type of 'grey outs' which lasted from 15mins to
several hours. During this ten year span I also developed pains
in various parts of my body and developed benign tumours which can be
felt below the skin in the legs and upper arms. Several standard blood
tests, (liver function, white cell count etc), have shown normal as
has an EEG. My doctor has said that I do not have Neurofibramatosis
because a  tumour taken from the leg (only  one was taken) was a
lipidoma. I have researched this disease and have been able to
correllate some of the diagnostic inndicators. eg Cafe-au-Lait
spots, freckling in groin and under-arms, mother with similar symptoms
(undiagnosed), and of course the subcutanous lesions. In view of the
effects on my conciousness which I now relieve by taking
amitryptiline, my difficulty walking, a rapid weight gain not
attributable to overeating and a marked loss of muscle power
which makes walking two blocks into an exhausting effort, I  am
convinced that I must be suffering some kind of affliction to the CNS.
Another possible indicator is a thickening of my left ear which is
definately not a fat accumulation. I also suffer from tinnitus which
has worsened in the last 2 years. Because earlier tests for blood
sugar, liver function etc have proved normal, my doctor is convinced
that my malady is psychosomatic and consequently has taken a position 
which precludes further tests.
	 I would like informed comments on my condition and also
I would like to ask if it is normal procedure for a doctor , when
presented with a case involving loss of consiousness, not to request a
brain scan?

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