How to find an RLS specialist?

[Daisy5664]

My IM doctor prescribed me Primapexole 15 years ago and whenever I mention that my symptoms are worsening she increases my dose. I need a specialist and am not sure how to find one. Any advice?

[Madlegs1]

What country are you in?

Some sites keep a register of RLS friendly doctors.

There are none in Ireland 😢

[Daisy5664 in reply to Madlegs1]

There is a RLS Foundation in USA but there are no doctors from Ohio that are registered. You would think there would be more experts considering the prevalence of this disease

[Madlegs1 in reply to Daisy5664]

Is there a chat group within that association that someone could make a personal recommendation?

[SueJohnson in reply to Daisy5664]

You might want to contact Rosemary Stader at rosemary@rlsgroupsorg who is a support leader in Ohio and ask if she knows any doctors near you. Another possibility is to refer your current doctor to the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a... You could also print out the pertinent sections i it and give it to your doctor.

[browntbdd in reply to SueJohnson]

Thank you!I just sent her a message and saw one listing in the Pittsburgh area

Text of doctor

[SueJohnson in reply to browntbdd]

I didn't realize you were near Pittsburgh. Actually they were just named a Quality Care Center by the RLS Foundation and he is the Doctor there so you will be in good hands.

[SueJohnson]

You are suffering from augmentation and need to get off the pramipexole and switch to gabapentin since pramipexole is no longer the first-line treatment for RLS. It used to be the first-line treatment which is why so many doctors prescribed it but they are not up to date on the current treatment recommendations. First, have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation numbers. You want your ferritin to be over 100. If your ferritin is less than 75 then take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach and preferably at night. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it interferes with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets. To come off pramipexole, reduce by .125 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end.. But in the long run, you will be glad you came off it. On the gabapentin, beginning dose is usually 300 mg gabapentin. Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin.

[pmmargo]

gabapentin seems to work for me. My Parkinsons doctor write the perscription. I saw that Hopkins in Baltimore has a RLS group and they believe RLS is due to excess glutamate (the neurotransmitter). Gabapentin is closely related to the corresponding inhibitory neutotransmitter and gets into the brain. Best wishes!

[rrggrr]

Look for a hospital with a sleep program and schedule with the neurologist on their team (not their pulmonologist). Generally speaking, that person will be up-to-speed on the current treatment algorithm.

[Daisy5664]

Thank you

[BLUES60]

Primapexole is a terrible drug and will only make things worse in the end ,causing you to augament , increasing the dose is not the answer ,my advise to you would be to wean yourself off the drug, I will be honest with you the withdrawal symptoms will not be nice,but in the long run it will be better for you! As for the specialist your doctor should be able to sort that , but my experience of them is they seem to know very little about rls

[FLfish]

Johns Hopkins in Baltimore has an RLS center: hopkinsmedicine.org/neurolo...