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Subject: Re: Primary CNS Lymphoma or Vasculitis? Writing about current diagnostic difficulties for my daughter (in her 30's). I have researched numerous articles (using IGM and other sources) and I volunteer in Medical Library so I have basic information. All care has been from major Eastern hospital and appear to be excellent. My question is whether CCF or others have experienced anything like this? She had a seizure in Dec 96 after a series of headaches going back to summer of 96. CSF and blood tests were basically normal and were followed by an inconclusive MRI-guided steereotactic biopsy. Nonspecific inflammation was the result and vasculitis was suspected. No evidence of any other organ involvement. MRIs throughout 1997 showed multiple lesions (7 - 10), all in right cerebral hemisphere. Most are in right temporal lobe with at one in right occipital lobe and possibly one or two in frontal lobe. Lesions waxed and waned somewhat but the dilantin she is taking kept everything in check during 1997. She's basically otherwise healthy and only missed time from work for appointments and procedures (MRIs, spinal taps, angiogram, EEG, Ophth, consult with MS specialist (neg), etc.). In Jan and Apr she had episodes (aura, short term confusion) but not definite partial seizures. MRI at end of May 98 showed significant growth in two or three of the lesions over Feb 98. She had partial seizure in June and the MRI at the end of June MRI showed additional growth. She underwent a second biopsy (craniotomy) on July 17 from which she bounced back with no complications and is already back to partial work days. Biopsy objective was to try and rule out lymphoma once and for all. Results thus far: specialists see cuffing of blood vessels with inflammation but no apparent direct infiltration of vessel walls. The Neuro-Pathologists are leaning toward vasculitis. However, a Hemato-Pathologist believes it is not inconsistent with lymphoma. Inflammation is predominately B cells. Specialized staining now being done to check for genetic mutation of DNA to check for lymphoma. Hopefully know the results in 7-10 days. Other: ANCA (both types) neg; recent ANA weakly positive (1:40), it was 1:160 once before; most recent CSF had 8 lymphocyte cells, none malignant; Sjogrens bloods tests both neg; etc. Pre- and post-op MRIs still show lesions only in right hemisphere - none in left. No treatments (other than dilantin) until we have a diagnosis. As I said at the beginning, anyone had a similar case? Thanks for listening. Dear Tom: I must compliment you for your most excellent description of your daughter's case. Yes, we see cases like your daughter's relatively frequently (at least a few a year), and it is almost surprising to discover how similar the stories and diagnostic difficulties are. Be reassured that your neuro-oncologists are doing just the right thing. I would like to wish your daughter good luck. |
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