Neuropathy after stopping dopamine agonist

[coloradolover]

In February 2023, my neurologist put me on a high dose of Sinemet CR 50-200 (3 tabs daily). I had a moderate case of RLS. I trusted her and she worked for a prominent neurologist in my town.

In June, 2024, I finally learned that this drug was inappropriate (harmful is probably the correct description). I ended up see Dr. Buchfuhrer for help. He stopped the Sinemet and replaced it with Suboxone. While the Suboxone has controlled my RLS and allowed me to stop the Sinemet, I am experiencing a new symptom. If I had to guess, it would be peripheral neuropathy. It's a burning and tingling sensation in my lower legs. Looking back at my symptoms diary, the first time I noticed it was 3 weeks after stopping the dopamine agonist and it has only gotten worse over time. I am currently taking gabapentin in addition to the Suboxone.

Has anyone else experienced this after stopping a dopamine agonist medication? I see Dr. Buchfuhrer at the end of the month but I did message him. He thinks it's neuropathy but didn't elaborate on what to do. His messages are quite brief

[SueJohnson]

Gabapentin is used to treat the pain from neuropathy. I use it for both that and RLS. How much do you take. How much do you take?

You need to see a neurologist as Dr B is not qualified to treat it. If you live in California Dr Clete Kushida is the Director of the Quality Care Center at Stanford and is a neurologist which Dr Buchfuhrer is not at 450 Broadway Street Pavilion B, 2nd Floor, MC 5730 Redwood City.

If you live in Colorado I have other names or in another state.

[coloradolover in reply to SueJohnson]

Thank you Sue. I take 900 mg of gabapentin per day. I live in Colorado so any referrals. you have would be appreciated. Becky

[SueJohnson in reply to coloradolover]

Dr. Jeffrey S. Durmer a neurologist in Denver who is Chairman of the RLS Foundation Board of Directors

900 mg is probably not enough but Dr Durmer will advise.

[coloradolover in reply to SueJohnson]

I desperately tried to get in touch with Dr. Durmer and reached out to him twice. I actually had a personal referral from another past board member, Jacci Bainbridge. But he didn't reply to either of my emails to him. His current business model looks like he isn't seeing individual patients anymore. Clearly he is an expert in RLS.

[ID158 in reply to coloradolover]

If you continue to have issues getting an appointment with Dr. Durmer, I have another good neurologist in Denver for you. Just send me a message and I'll give you his info.

[SueJohnson in reply to coloradolover]

There is also Dr. Aaron Haug in Englewood. Colorado a suburb of Denver which is who ID158 will recommend.

[SueJohnson in reply to coloradolover]

Did you try calling Dr Durmer's office at [phone]

[coloradolover in reply to SueJohnson]

No, he was cc'd in an email message originated by the RLS Foundation and then I reached out to him personally. Thanks for the phone number.