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Hi,

Just wanted to share that I received my Fox Insights 23andme dna results back. I did not have the 2 Parkinson's genes they test for. Go figure! Doesn't make it go away, but good to know I guess.

Also, I saw a movement disorder specialist and had a datscan that confirmed early-onset Parkinson's but she wants to hold off on meds until my symptoms get unmanageable. Has anyone else's doctor suggested this?

Lastly, do any of you feel way more anxious, shaky, jittery when you are sick? I have a horrible cold and have felt wretched for a week. I don't recall cold viruses affecting me that way before diagnosis.

 

Thanks everyone!

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Hello, AmytoBeth.  Sorry to hear you are not well.  And yes--definitely I am shaky and nervous and hyperventilating over what seems to possibly be a serious sinus infection.  The hyperventilating is new, especially.  I had a very, very sharp pain on the top left of my head a couple of days ago, and so of course I'm wondering if it's connected.  Am concerned about how it might affect my Parkie brain even further. Fortunately I was able to get an appointment with a top sinus doc tomorrow.  If he shares anything with me that might be helpful to us, I'll pass it on.

Hope you feel better soon.

Linda Garren

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As my PD progresses, I find simple things trigger anxiety. I used to be able to lower my walker from sidewalk to street level (about four inches) without difficulty. Now my body freezes and my brain screams, "Danger, Will Robinson, danger!" Only those of a certain age will remember the late 1960's TV series Lost in Space. For those who remember, you will understand how I feel.

Dianne   

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I get way stiffer and have much more pain when I'm sick. Kinda like having the stiffness from the flu only with a regular cold.

And I'm not sure about those genetic tests--the real deal they wanted me to do was $14,000 (they didn't take my insurance) so I refused to do it. I'm not much about trusting anything that cheap, especially since it only looks at a couple of genes. I've had four people on two sides of the family with Parkinson's, kind of a useless test at this point.

I guess it depends on the type of symptoms you have? They put me on Mirapex immediately because I'm very obvious while "off".  Really bad posture, no arm swing, dysarthria, etc. I'm 32 and didn't need my employer knowing something is wrong, so they definitely put me on the meds even while in diagnosis limbo. I was switched to Requip bc of the side effects of Mirapex. Usually they will put you on the lowest dose of either Requip or Mirapex and work their way up, so I'm kinda surprised to see them not do it. I personally wouldn't be able to last very long without them.

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Anything that adds stress to  your body will make symptoms come out more. It can be a cold, stomach bug, work, friends family coming over, not good sleep, ect.

I know when I am sick or have friends coming over for a gathering it increases symptoms.

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Thanks everyone for your feedback! As for the dna testing I got it done free through Fox Insights. I agree- I don’t think the testing is very extensive. 

 

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I did my 23andme tests couple months ago and they didn't find anything as well. No relatives with PD, but in my case it is really hard to to track my ancestry  tree deeper than grandparents. 
I didn't started meds right after diagnosis with idea to postpone them as much as possible.  definition of 'unmanageable' is very personal and depends on your occupation, level of stress and type of symptoms.  5 months later i am at point that i need to do something to be productive at work. i guess it will be completely different perspective if i will be closer to retirement when my kids old enough not to be dependent on my income.   

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