Giant Cell Granulomas

Anne Leeson aleeson at abacus.com.au
Thu Jan 27 11:10:29 EST 2000


I am looking for some advice please,

I am from Australia and have been immune suppressed.  In 1991 I was
diagnosed with either a Wegener's Granulomatosis or Sarcoidosis like disease
(Sinus biopsy showed granulomas - the main area of the sinuses that was
affected was the right maxillary antrum and sphenoid sinuses).  Also X-ray
showed granulomas on my lung.  (I used to be an antique restorer and used a
lot of chemicals and sanded back karri pine etc)     After the diagnoses I
was given 5 years of high doses (up and down) of prednisone and one year of
chemotherapy to help this.  In 1994 I was told that this was a misdiagnoses
but they were not sure what was going on.   They did another sinus biopsy
looking for fungus but said there was none (but wouldn't that reading be
inaccurate due to the high doses of prednisone I was on at the time?)  I
have had 4 sinus biopsy's altogether.    My problem now is that the right
maxillary sinuses feels very pressured and I have been saying for years that
it feels like a ball is stuck in there - also I feel like I have acid poured
into me down my nose into my throat (hits the right side) and even my tears
burn at times - I also lose hearing    This also affects my thinking - I
feel very spacey  - almost like being constantly drunk - even though I don't
drink alcohol.

At times I have been put on sporonox whilst given antibiotics for sometime
and I have noticed that looking back into my diary that I have had a big
improvement with this medication - though the problem never fully goes away.

I had never heard about Aspergillus till I read some information on it last
week and know that I should get this looked into.

My main question is can anyone help me with regard to this?  Putting me onto
a good infectious disease specialist in Australia who might have a bit of
knowledge about this infection?  I live in Perth, Western Australia but
would be prepared to travel to Melbourne or Sydney if necessary.

Please any advice would be greatly appreciated as I am in so much pain with
this.

Thanks for your time
Anne
aleeson at abacus.com.au
089-318-8189


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