Guest guest Posted September 18, 2002 Report Share Posted September 18, 2002 Setzer sent me this further note from the folks who did Deborah's PET scan. I post it here with his permission. Regards, Pam >From: dhawan@... >To: rsetzersr@... >Subject: RE: Your assistance is needed >Date: Wed, 18 Sep 2002 11:35:07 -0400 > >Hello Mr. Setzer, > >Sorry for the delay. I read with interest the stuff that you sent me. It is >correct that nothing in science is 100% and no imaging test is foolproof. >On >a theoretical level, if FDOPA test is abnormal, it is considered a definite >sign of parkinsonism. Some of the times, however, the abnormality on the >PET >scan may be marginal especially at early disease stage. In these type of >cases the prudent course is to repeat the scan at 1-2 year interval. A >change in the PET image then clarifies the diagnosis. Imaging of the heart >with dopamine is useful but not as straightforward as brain imaging. Data >is >being gathered to show the effectiveness of brain imaging in predicting MSA >(autopsy data is the gold standard so far). Regarding Deborah, we are >pretty >confident that she does not have parkinsonism based on the two PET scans >that were performed. Repeat scanning in 12-18 months will be necessary only >if the clinical symptoms become worse. I wish that she improves as the time >goes by. Good luck. > >Vijay > >Vijay Dhawan, PhD >Center for Neuroscience >North Shore Univ Hosp >350 Community Dr >Manhasset, NY 11030 >Tel: >Fax: >email:dhawan@... > > > Your assistance is needed > > > >Good Morning Vijay, > >I saw your response to Pam at Shy-Dragger and than she posted a multitude >of > >articles from other reports there. Afterwards, she posted what she >thought > >was a general thinking of all put together. As you know, Deborah and I >both are trying to educate the listserves with as much knowledge as >possible. As you know, Doctors do not Dx 100% and your giving the 20% was >actually kind. We have found evidence that it is closer to 30% of the >time. Deborah researched yesterday for about 2 hours checking out when >Medicare would give the green light for these scans and found that it will >be another 2 years before that will happen. This is because of them wanting >more research results about the percentage of cancer for patients receiving >these radioactive isotopes. The 2 years is a research and fact gathering >moratorium that was set in Dec. 2000 for a 4-year period. > >I would appreciate it if you would read the following two posts I am >sending > >you along with this and give me your opinion. I have a hard time >understanding some people out there who just " DON'T GET IT " . > >The one real question I have is about waiting after Death to prove that >these Scans actually work. Can you give me any information to the >contrary? Also would you comment on the F-Dopa scan for the heart? >This > >one I had not heard of prior to Pam writing about it. Would you please >explain the clinical significance of this to me and how, if it does, would >it relate to what we already know about Deborah from her 3 PET scans there. > >We both thank you and your staff for all of your assistance and care. You >folks are, well, words can't describe how wonderful you all are. We have >told the world about you and your center and its care. > >Again, thank you and hopeful for your reply, > > Setzer sr. > > > > > >Pam, > >That sounds like a reasonable assessment at this time. There is one >additional note however, all of these studies were done on patients who >were diagnosed by conventional methods ) and therefore we will not >know for sure how well the tests work until patients who have been >assessed by these methods die and have autopsies. > >Most of the papers did NOT claim perfect diagnostic powers of any of >the tests and several papers questioned the valisity of other papers - >as far as I could tell - because of the same type of question I posed >above. Therefore I feel that while the tests may help with an exact >diagnoses, they are not perfect. > >Now comes the big question of how many tests do you need? Since there >is no cure for PSP, GBGD, PD, MSA or any of these brain disorders - is >it worth the effort and expense. We all know how hard it is to get a >MSA patient to a doctor's appointment much less a 90 minute PET scan. >Can your patient lay still for 90 minutes? Can you afford it - >certainly ask first if your insurance will cover it. These are >questions you must ask before deciding if it is right for you. I don't >know, but decided against a DNA test they said might narrow down >Charlotte's problems as insurance would not cover it as all suspected >problems were incurable. I felt she had enough. > >Take care, Bill Werre > >============================================ > >Pam Bower wrote: > > >Note: Most of this is taken word for word or slightly paraphrased from > >http://www.emedicine.com/neuro/topic671.htm > >See the section on " Workup " . > > > >The rest I've gleaned from what I posted this morning. > > > >If you agree or disagree with my interpretation, please let's discuss. > >Regards, > >Pam > > > >--------------- > > > >Scanning Technologies Available to aid in MSA Diagnosis > > > >1. MRI scans of the brain > > - MRI may be normal in MSA > > - MRI can help to exclude other diseases > > - OPCA, cerebellar atrophy, and the putaminal lesion of >striatonigral > >degeneration often are detected by MRI > > - In MSA involving the extrapyramidal system (of the brain) a > >T2-weighted MRI shows a characteristic finding > > > >2. PET scans of the brain > > a. L-Dopa PET - determines the presense of a parkinson-like >disorder > > > > b. FDG PET - For differentiation between MSA and PD, fluoride F >18 > >fluordeoxyglucose dopa (FDG) positron emission tomography (PET) imaging >can > >be used. > >The caudate-putamen index, which is calculated by a formula based on the > >difference in the uptakes in the caudate and putamen divided by the >caudate > >uptake, is lower in patients with MSA than in patients with PD. > > > >3. Scintigraphy of the heart > > a. Scintigraphy with MIBG - Scintigraphy with I 123 MIBG appears to > >be > >a useful tool for differentiation between PD and MSA early after onset of > >autonomic dysfunction. > > > >4. SPECT scans of the brain > > - Can differentiate Parkinson-like disorders from other disorders >like > >Essential Tremor > > - Is unable to differentiate between Parkinson's Disease, Multiple > >System Atrophy > >and Progressive Supranuclear Palsy. > > > >_________________________________________________________________ >Send and receive Hotmail on your mobile device: http://mobile.msn.com _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
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