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Old 03-30-2011, 10:19 AM
trixiedee trixiedee is offline
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Join Date: Jan 2010
Location: Brighton, UK
Posts: 141
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trixiedee trixiedee is offline
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Join Date: Jan 2010
Location: Brighton, UK
Posts: 141
10 yr Member
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Quote:
Originally Posted by Debi Brooks View Post
Trixie,

I find it quite odd for a neurologist to tell you you have genetic PD. It is extremely rare to have a truly hereditary form of PD. Some doctors will note, if there is a family history of PD that your risk for PD might have been higher but those higher risk factors could be a consequence of genetic risk factors or environmental risk factors...families share both. But, little can be said with the information that doctor has about risk factors for your children (I don't know if the 25% was your assumption or the docs, but such calculations are not simple and its highly unlikely that it is accurate--likely way too high).

Rather than try to interpret the doctor's statements (to make sense of them), might I recommend you try to see a movement disorders specialist... Depending on where you live, you will hopefully have access to one. You will likely get better information and you will likely get better care.

On 23andme's PD community study, the test (which is essentially free for all PD patients) doesn't test for all known PD mutations but it does test for the most common genetic mutation (LRRK2). LRRK2 mutations (again the most common) are only seen in about 3% of the PD population (although higher in some ethnic sub-populations). So other mutations are even more rare. It is important to note that the vast majority of PD patients are still considered idiopathic "cause unknown" ... having said that, the more patients who do the spit test, perhaps the more we could learn about additional "common" genetic risk factors for PD.

But, my main point here is I believe you have been given erroneous information and with that in mind, I'd consider finding a new doctor -- a movement disorders specialist if possible.

Debi
I'm not sure if a Movement Disorder specialist is an American thing, the neuro I saw is a Professor of Neurology (and PD specialist) at the top neurological hospital in the UK. He seemed to come to the conclusion that it may be genetic PD because I have had (mild) symptoms since my teenage years, and also because my symptoms fit the LRRK2 or Parkin genes. The 25% figure was his, he said that if it's genetic my kids have a 50% chance of having the gene and then a 50% chance of getting PD. However I had a very traumatic childhood unlike them (so far anyway!) so I imagine the risk is far lower.

Trixiedee
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