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Real members of MyParkinsonsTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

I am a 70 year old female Parkionsons patient diagnosed in 2014. I took Azilect along with C/L and stopped the Azilect but continued

A MyParkinsonsTeam Member asked a question 💭
Houston, AK

with the C/L. I now take 1700mg of C/L daily and it's giving me severe chronic constapation. I also had DBS surgery in 2020 because my tremors and dyskinesia were out of control and now I'm suffering from a very rare lesser known symptom of Parkinson's disease called PGAD (Persistent Genital Arousal Disorder) or RGS (Restless Genital Syndrome) please if anyone else is suffering from this horrible condition please contact me, because it's driving me crazy and I feel so alone trying to deal with… read more

March 18 (edited)
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A MyParkinsonsTeam Member

@A MyParkinsonsTeam Member, I will allow you to text me, but I will spell out my number. If I type in numbers, this platform will block it. Hopefully, this will work. Let me know, if it doesn't. Also, let me know who you are so that I will make the connection with this conversation.
You can text me at eight one six, six four five, four one five two.
For anyone else reading this, I am only inviting @A MyParkinsonsTeam Member to text me. This is a very private and sensitive subject. I do not wish to discuss it with anyone else at this time.

March 19
A MyParkinsonsTeam Member

Thank you so much for your quick and kind response. I don't do facebook but I will figure out some way that we will be able to communicate.,how about

March 18
A MyParkinsonsTeam Member

@A MyParkinsonsTeam Member, I wish that there was a way to have a private conversation on this platform. I don't have any answers for you, and I don't really want to talk about it with anyone, especially publicly, but I want you to know that you're not alone. If you are on Facebook Messenger, you can easily find me. I have 2 accounts in my name and somebody else has made a fake account or 2 in my name. The difference is that my true accounts each have a profile full of information about me. I have nothing to hide. The profiles of the fake accounts in my name are empty. If you can find me, and I realize who you are, I will discuss it there,privately. In the meantime, I'll be praying for you.

March 18
MyParkinsonsTeam

How can someone with Parkinson's find support for managing restless genital syndrome (RGS) after DBS surgery?

It's completely understandable to feel isolated dealing with such a challenging and personal symptom. You're not alone in experiencing unusual or distressing symptoms related to Parkinson's and its treatments.

Show Full Answer

How can someone with Parkinson's find support for managing restless genital syndrome (RGS) after DBS surgery?

It's completely understandable to feel isolated dealing with such a challenging and personal symptom. You're not alone in experiencing unusual or distressing symptoms related to Parkinson's and its treatments.

Sexual dysfunction and changes in sexual symptoms are recognized complications that can occur with Parkinson's disease. These issues can stem from the disease itself (due to decreased dopamine affecting pleasure centers) or from treatments including medications and procedures like DBS.

Here are some steps that might help:

Talk to your movement disorder specialist or neurologist about:
- Whether DBS settings adjustments might help reduce these symptoms
- Medication options that could provide relief
- Referral to specialists who understand sexual dysfunction in Parkinson's

Consider additional support:
- Sex therapy or specialized counseling for managing distressing sexual symptoms
- Connecting with other members on MyParkinsonsTeam who may share similar experiences
- Working with both your neurologist and potentially a urologist or gynecologist familiar with Parkinson's

Sexual problems, including very high or compulsive sex drive and other unusual sensations, are documented in Parkinson's and can be related to dopamine medications or procedures. While RGS specifically may be rare, sexual dysfunction overall affects many people with Parkinson's.

You deserve compassionate medical care for this symptom. Don't hesitate to advocate for yourself with your healthcare team until you find solutions that help.

March 18

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