Results From New Neurologist Visit

[C82021]

My past visit to a Neurologist I was offered Pramipexole, I declined (Due to information from this site as well as Mayo advice) and the DR. said if I don't take her advise she would no longer see me. So that ended that relationship.

Scheduled an appointment with another Neurologist, he asked why I declined the Pramipexole. I told him what I knew from latest information on the drug. He prescribed Rotigotine 1mg patch. I said I had concerns of augmentation. He said the augmentation goes away, you want it or not up to you. I asked about drugs like Dipyridamole and low dose Buprenorohine. That wasn't going to happen. I showed him the Mayo information and he said see right here, it's their second choice of medication. So it's Rotigotine or nothing. Currently on 300mg pregabalin, asked if I could combine Gabapentine and Pregabalin and that was a firm no.

So I am 74, thinking I should try the patch, what say you??

[Joolsg]

No, no, no.You are 74. Augmentation doesn't 'go away'. It becomes worse and worse until you want to throw yourself out of a 19 storey building to end the suffering.

We had an 80 year old lady who died last year. She was suffering augmentation and walking up and down, up and down, exhausted. She fell and died from a bleed on the brain.

Find another doctor.

There are several good doctors in the USA.

The new guidance from the American Academy of Sleep will relegate dopamine agonists to 'end of life' scenarios.

I'm shocked that 2 separate doctors are trying to force you on to dopamine agonists!

Have they offered you iron therapy? Pregabalin and gabapentin and Horizant are first line meds under the Mayo guidelines. As they're not working, you need to find a doctor who is familiar with low dose opioids for RLS.

Dr Winkelman, Dr Berkowski, Dr Earley, Dr Ondo. There are many of them.

Have you joined rls.org and asked for a recommendation?

[C82021 in reply to Joolsg]

Iron levels were checked and inline. My GP so far I feel has been great. Gabapentin, Pregablin so on, at least she is cooperative. It was her advise to see a Neurologist, I like her best so far.

[SueJohnson]

No, No, No. It is a dopamine agonist. It will cause augmentation and augmentation doe s NOT go away. It makes RLS worse. You are in the US so it is easy to change doctors. What city and state do you live in? I may be able to give you the name of a knowledgeable doctor.

[C82021 in reply to SueJohnson]

Crossville Tennessee, Thanks Sue.

[SueJohnson in reply to C82021]

I previously recommended Dr. Kanika Bagai, a neurologist [phone] at Vanderbilt to you. Although that is 114 miles away from where you live, you will probably only have to go there once and then can do telehealth appointments. She is an expert and part of the RLS Quality Care Center there of which there are only 12 in the country.

[C82021 in reply to SueJohnson]

Yes you did, I'm trying to see if I can get her approved by the VA which is right next door to Vanderbuilt, I had to see the VA Dr first which was last Monday in Nashville. Otherwise I'll go through my non Va health care.

"THANKS"

[ParisianTN55 in reply to SueJohnson]

I’m also in Tennessee. I will see if I can get in with this Dr. also. I live in a rural area and these Drs. don’t really understand RLS,

[Madlegs1]

I'm really angry that two so called experts can be this rude and dismissive.

Unacceptable behaviour.

Can they be reported to some medical board.?

[707twitcher]

If you like your GP, give him/her the Mayo info and ask him/her for buprenorphine or dipyridamole. My GP (US, like you) listened and has prescribed what I have provided her info about. Yes, finding a knowledgable doctor who can be more proactive would be the ideal solution, but most of us declare victory if we succeed in educating our doctors who are willing to listen.