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Is the Syn-One Test worthwhile after my RBD Diagnosis?
I am a 69 year old man and have had RBD for at least 6 years along with constipation. I had the RBD confirmed with a sleep study but the videos I took of myself kicking and punching and the bruises on my bed partner are more than enough for confirmation that I have RBD. I usually remember the dreams in detail. Now I take 6mg of Melatonin before bed and I rarely have any severe RBD episodes. Besides the RBD and constipation I have no other Parkinson's symptoms. My sense of smell is good.
My neurologist said that she thinks I have Parkinson's and that I should prepare for the onset of symptoms within 10 years. Another neurologist examined me and saw no signs of Parkinson's other than the RBD and constipation. Both are also movement disorder specialists here in Thailand. They said there is no Syn-One test in Thailand.
I eat a very healthy Mediterranean diet and exercise daily and am in good health. I am trying to decide if the Syn-One test would be a good idea but it would require that I travel back to the USA to take it. The Having some certainty about whether or not I have Parkinson's would be nice but I'm not sure the Syn-One test would give me that. Another option is the DATscan which is available here in Thailand. Thanks in advance for sharing your opinions and thanks to all those who have shared in previous posts which I have been reading through.
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I don’t have the answer to either question but I would certainly be interested in any responses you receive. I am the wife of a 65 yo man who has constipation for years, loss of smell and acting out dreams to the point that I feel sure he has RBD. Out healthcare in our rural area has not allowed for the sleep study yet but should be hopefully within a month or so. I’m not sure how to follow you for any responses but I would be very interested to know. Please accept my sympathies for your concern. Have you checked in with the Michael J Fox Parkinson’s organization? I watched a recent video some months ago that may have answered your question. I suffer with a poor memory. If I can find it, I’ll add it if I can get back here.
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2 Reactions@tngirl103 - thanks for the information you shared. I hope you get more answers about your husband and his condition. You will be notified of any responses to this discussion, so you shouldn't miss anything.
I know that if one for sure has RBD, sometimes they act out contact sports and things while sleeping. Are you feeling safe for the present with your husband acting out his dreams?
The Syn-One test is sent to your doctor as a kit.
In the US it includes FedEx shipping. They require
the specimens to be less than 5 days in the media supplied to validate results. You would have to make sure it arrived in the US lab in 96 hrs so best to speak
with the lab if you go ahead. It is expensive around
2000 dollars for Medicare stateside. Takes 3 weeks
turnaround to results.
Do you want to know? It is probably the most sensitive
and specific when biopsied properly. I had my dermatologist skin surgeon do mine. If it is positive you
could still consider a DAT scan if your neurologist orders
it.
@lisalucier Thanks so much for your kind concern. Yes, we have had some bizarre incidents! I admit I’m more wakeful and often am able to grab his hands so to diminish any activity.
🙂
Hopefully with the RBD diagnosis they will recommend melatonin.
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1 Reaction@tngirl103 Thank you for your reply and concern. I have been reading through the Michael J. Fox website, lots of great information there. After punching my bed partner in the face one night, I moved to a different bed until I started taking the melatonin and seeing good results. Please stay safe. I wish you and your husband all the best.
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1 Reaction@seniormed Thanks for your reply. That is great information about the cost, it is not cheap! On top of the cost of the test (high insurance deductible here) I would also have to pay out of pocket for the doctor's fees and travel cost to the USA, so it really adds up. Did you find that knowing the results made it worthwhile?
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1 Reaction@surat57
Received this invitation today. You may be interested.