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Re: International contact for sure diagnosis

Posted By CCF MD mdf on December 07, 1998 at 22:05:55:

In Reply to: Re: International contact for sure diagnosis posted by Sandor on December 03, 1998 at 14:06:07:

Thank you so much for reply, your opinion is very helpful for me. But I don't want to wait for autopsy, it's not a good joke...
What do you think about the PET scan? This summer I was examined in Boca Raton ( US, FL ), and the pictures were normal. Later it was told me by other doctor, that I need fluoro-L-Dopa PET, and not the fluoro-glukoz, which I had.
Is it tru, that fluoro-L-Dopa PET gives a clear picture of disease?
I am invited by a german special Parkinson clinic, and they provide a diagnosis, based on this F-l-Dopa PET, and an IBZM-SPECT ( it's something to study dopamine receptors.) This two examination methods not available in my country, and in Germany whithout insurance they cost a lot of money.
The question is: which result I can expect? May I hope to get better treatment after this tests?
Would you please send me the e-mail adress of recommended London clinic on the Queen's Squere?
Best regards  Sandor.
I have no practical experience with PET scanning. I am aware of its use as a research tool, and indeed flurodopa is a common tag to label areas of malfunction around the basal ganglia (a collection of cells in the core of the brain which isn't working right in PD and other movement disorders).
I don't think I would invest your own money in having a PET scan done. I personally don't use PET data to distinguish between PD and parkinsonian look-alikes. Most clinicians can tell the difference between diseases in advanced stages (though they still fool even the experts sometimes; the autopsy comment was no joke). There is an intense interest among movement disorders specialists to find ways to distinguish similar diseases at early stages. There may be centers using PET in a research effort to do this. So far, there isn't any technique in wide use which is foolproof.
Therefore, if someone offers you fluorodopa-PET for free as your participation in a research study, that's one thing. But I would be hesitant to pay money (in 1998) for PET as a clinical tool.
My own treatment strategy is a systematic one, and it usually becomes apparent who has PD and who has something else, because in most cases PD is the more treatable condition. Many doctors make mistakes in how they use the medications - for example, they choose the right meds but may not take the dose as high as they should. There is nothing about PET data that would make me change the way I suggest medication.
Regarding Queens Square: I wish I knew the e-mail address for you. I wonder if they have a web site (worth using Yahoo or something like that to search the web). It's the leading neurologic institution in England. By the way, there is also a strong Parkinson's group in Grenoble, France.
I hope this helps. CCF MD mdf.

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