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Re: International contact for sure diagnosis

Posted By Sandor on December 03, 1998 at 14:06:07:

In Reply to: International contact for sure diagnosis posted by Sandor on November 30, 1998 at 17:23:41:

: I'm 44, and 6 years have slight parkinsonian simptoms, mainly in right arm, and some speech difficulty. Since 1995 I take Sinemet CR. This year I changed my neurologist, and the new one diagnosed me with MSA ( striatonigral degeneration). I have several CT, MRI, SPECT and PET scans, but there are nothing exact on the pictures . Hungarian doctors usually do not try to find a final diagnosis ( PD, PD+, MSA ), because they say: the treatment(medications) the same. But the future life conditions not the same, and I'm too young.
: So, I have 2 questins:
: 1: How to find the exact difference between PD and other PD like diseases? What I need for sure diagnosis?
: 2: Would you recommend me a clinic, a team, or a person in Hungary or anywhere in Europe, specialised on PD, for second opinion, and diagnosis, and of course for optimal, long term treatmet.
: I really need help, please, give me a suggestion.
: (Sorry for my English...)
Probably the strongest movement disorders group in Europe is the one at Queens Square in London. Dr Niall Quinn and others (Dr Marsden just died) are tops at MSA, PD, and related disorders.
Parkinsonism is a term which refers to a set of symptoms: slowness of movement (bradykinesia or hypokinesia), resting tremor, muscle rigidity, and postural instability. These are the core features of parkinsonism, and you only need a subset of these to qualify. Other symptoms or signs may be added.
Parkinson's disease (PD) is a specific entity. It is the most common form of parkinsonism (probably 70-80% of patients with parkinsonism actually have Parkinson's disease). If you have read much, you know about the degeneration of neurons (cells) in the substantia nigra, which is an area in the brainstem about the size of your finger nail which makes a critical compound called dopamine. You may be aware that Sinemet is made of levodopa, which gets turned into dopamine when it enters the brain from the blood stream.
Other parkinsonian syndromes (including MSA, PSP, and others) are different diseases. They share in common the symptoms of parkinsonism. But when you examine brains under the microscope, the populations of dying cells is different, and the stuff that accumulates in them is different. For example, PD has Lewy bodies. MSA does not - instead, it is characterized by clumps of stuff in oligodendroglia (a particular cell type which doesn't happen to be a neuron). PSP has yet another appearance under the microscope. Diffuse Lewy Body Disease (another variant) has Lewy bodies, but they are everywhere, not just the brainstem.
Confusing yet? All I have said so far is how to tell the diagnosis when it's too late - at autopsy. Movement disorders specialists spend their lives trying to refine the ability to make the distinctions among these diseases while a patient is still alive. You're right: although we use the same medications, the prediction about how well they'll work and what might happen to you does differ.
MSA is characterized by parkinsonism, ataxia (a particular type of incoordination related to the cerebellum), and autonomic dysfunction. MSA now incorporates what once was thought to be three diseases: Shy Drager Syndrome, Striato Nigral Degeneration, and Olivo Ponto Cerebellar Atrophy (late onset non-hereditary type).
There is more to say, of course. But the bottom line is: diagnosis is made by experience of the examiner. There are no tests (except autopsy) which really help with the diagnosis - no use for EEG, EMG, blood tests, and little if any use for MRI.
I hope this helps. There may be other movement disorders groups closer to you in Europe, but I think the leading group is that at Queens Square. CCF MD mdf.

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.

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