Restless Legs Syndrome (RLS) Discussion Board

You were right! In two nights I augmented on the "small" doses of Sinemet and returned to the 2 mg. Neupro patch which after a day or two transition period is working fine. Unfortunately, as I live in New Jersey, Hydrocodone or tramadol cannot be prescribed for RLS symptoms but I do know how effective they are having taken Oxycodone for two years of pain prior to back surgery. I did ask my neurologist if he would prescribe one of these meds and he flatly refused. For now I will continue the patch albeit I have the skin irritation issue. As noted by one of our members, patch placement is more effective for me if applied to the upper body, i.e. shoulders, upper arms and back and they do adhere better than if applied to thighs. Also, I have changed the time of application from evening to midday because peak concentration is reached 12-17 hours after application.

That just makes me want to cry that your neuro outright refused to prescribe something that would help you. So thankful the Foundation is doing opioid advocacy.

Caitrin, since your neuro seems so dead set against prescribing an opioid, you might want to start thinking about going to one of the Foundation Quality Care Clinics. There are several that are "somewhat" close to you. There is one in Baltimore at Johns Hopkins, one in Connecticut at Yale and one in Boston at Mass. General. It can take a number of months to get a new patient appointment at a QCC, so if you are interested, you don't want to wait until the last minute.

Rustsmith wrote:Caitrin, since your neuro seems so dead set against prescribing an opioid, you might want to start thinking about going to one of the Foundation Quality Care Clinics. There are several that are "somewhat" close to you. There is one in Baltimore at Johns Hopkins, one in Connecticut at Yale and one in Boston at Mass. General. It can take a number of months to get a new patient appointment at a QCC, so if you are interested, you don't want to wait until the last minute.

To add to that, the Foundation is doing a LOT of opioid advocacy. There are ways to get involved and help. I know not all of us have the same bandwidth and abilities to help, of course.

Ann and Steve, Thank you both for encouraging me to contact a QCC nearest me. I chose Dr. Koo at Yale and spoke with his office who had a record of my call to them last fall but I did not follow through. I may be able to see Dr. Koo in July or August and am on a waiting list for October. I immediately called the two doctors who treated me for RLS and one will be faxing my records to Dr. Koo's office and the other has made available to me all of my records which I will pick up tomorrow. Meanwhile I will continue with the 2 mg. Neupro patch.
Kathy

Caitrin wrote:Ann and Steve, Thank you both for encouraging me to contact a QCC nearest me. I chose Dr. Koo at Yale and spoke with his office who had a record of my call to them last fall but I did not follow through. I may be able to see Dr. Koo in July or August and am on a waiting list for October. I immediately called the two doctors who treated me for RLS and one will be faxing my records to Dr. Koo's office and the other has made available to me all of my records which I will pick up tomorrow. Meanwhile I will continue with the 2 mg. Neupro patch.
Kathy

Here is hoping you get in sooner than later!

What good news!