Telehealth appt. made with Dr. Berkowitz finally

[FLfish]

Had an appointment w/my new primary care doc Monday (hubby and several neighbors see and rave about her and the entire practice), but yesterday I finally bit the bullet and made an appointment with Dr. Berkowitz, who many on this forum have said is wonderful and who is affiliated with the RLS Foundation. Although I will have to pay his fees out of pocket (I cannot seek reimbursement from Medicare), for once I feel lucky to be in Florida--one of only three states in which he "sees" patients. My new provider, albeit fairly young, is still old-school, and the two previous docs whom I saw in my previous practice were old and also old-school (Requip, Requip, Requip, etc.). Because Dr. B will be sharing the results of my visits with him with my new provider, I hope the new provider will catch on that the old ways are the wrong ways. I felt so emotional at my first visit with new PCP, hoping either she would be up-to-speed on modern treatments for RLS or that I would have the courage to discuss the RLS Foundation and Mayo Clinic algorithm. I even took the RLS Foundation booklet for providers with me. Alas, I chickened out, devastated once again to meet with someone so highly thought of yet so behind the times. I will see the new PCP again in June, but I'll have had several months under my belt with Dr. Berkowitz by then. I'll take the RLS publication to my June appointment with new PCP. Two docs ago, the provider actually said to me that I wouldn't find anyone better in the area to treat my RLS, that he was smarter than the Mayo Clinic, how brazen of me to ask for pregabalin, and, basically, F*** the RLS Foundfation. I was truly stunned, and needless to say, did not go for a follow-up. Fingers crossed for next Wednesday!

[Opie__]

So sorry you are having so much trouble with getting answers. Several on here are much more informed and great at answering all questions. My PC physician was very uninformed as well about RLS and I was given DA that caused augmentation. Fortunately once I met with a neurologist, my PC was completely willing to work with him and follow his lead. Hoping you can get some answers next week.

[Merny5]

So sorry that you have had to deal with ignorant and arrogant physicians. Dr. Berkowitz is a companionate and extremely knowledgeable individual. He most likely will provide a very comprehensive report for you to give to your PCP. He may even be able to treat your RLS via telehealth. I think that he can prescribe in 3 states and I believe that Florida is one of them. Good luck to you FLfish 🤞🏼

[Tanker1]

So sorry about your troubles finding someone that is knowledgeable. Their attitudes are stunning. Personally I would take a copy of the mayo clinic guideline paper + RLS foundation publications and get in their face. But thats just me. I might also look for a place to report (i.e. file a complaint) such incompetent and dangerous behavior.

Maybe this is none of my business but why won't medicare cover your visit? Medicare + my medigap insurance covers my quarterly telehealth appointments with my sleep doc.

[FLfish in reply to Tanker1]

Docs have to apply to be a Medicare-participating doctor. Dr. B has not done so nor wants to do so, i guess. I had to sign an agreement stating that I understand that and will self pay. I doubt, but don't know for certain, that my medigap insurance will reimburse anything since the claim is not a Medicare claim to begin with.

[Tanker1 in reply to FLfish]

Got it. Thanks. Dr B has not "taken assignment".

[TeddiJ]

I hear you. I am in the US and have been to so many doctors and most wouldn't even consider looking at the research nor would they talk to Dr. B in CA. It becomes very emotional at these appts. when you have waited so long for them and have such high hopes. Then when you fight off tears they think you are also crazy or on the edge-just fab. I finally flew to see Dr. B and paid for it all, of course. In the end, talking to, and/or paying for, any true RLS specialist is worth the mental peace and emotional support you get from a doctor who actually is on top of the latest research and fully understands.

[FLfish in reply to TeddiJ]

OMG, you described it perfectly. Thank you for posting.

[TeddiJ in reply to FLfish]

Thank you! Good luck-I know you'll have a great appt.!

[dklohrey]

Had RLS for about 20 years, having been treated with ropinirole (requip) for many of those years. Finally started suffering from augmentation, so I weaned myself from ropinirole and switched to pregabalin. Fortunately, my gp had had rls and was very familiar with the various treatments. I had some issues with constipation with pregabalin, so my gp switched me over to gabapentin (1200 mg). The results were mixed with me getting 4-6 hours of sleep a night. My gp then suggested that I add trazodone to my sleep schedule. Trazodone has been around for a long time and is extremely safe. It really helps to clear the mind and give a general sense of well being. The combination of these two drugs has been great. I now get between 6-8 hours of sleep a night. As you probably already know, rls is made worse by stress and trazodone helps to alleviate it. Hope this helps!

[SueJohnson in reply to dklohrey]

Did you ever have your ferritin checked?