Quality Care Centers

[Stainless]

I finally got in a position where I could drive 2 days from Florida to Baltimore and see a Quality Care Center specialist at John Hopkins. They are no longer accepting out of state patients because of prescriptions.

I have searched Florida, spent thousands and found nothing. I've seen 3 neurologists for my 55 year serious RLS and they threw their hands up and said seek out a specialist. I'm on Clonazepam and Lyrica but at 65 am worried about the future. Everything keeps getting worse. What do I do now. Rick

[badnights]

This may sound ridiculous but you could move out of Florida. You wouldn't be the first to move states in order to be near a decent WED/RLS doctor.

It might come down to a difficult choice like, What's more important to you, your home or your health? If that's what's going to happen, it would be better to move now than when you're in your 70s.

[Stainless]

Thank you badnights but after 65 years in Florida, I think I'll finish up here. I live in Paradise in spite of the crazies.

I guess I'll try Atlanta next but I read they don't do IV Iron, and I think that I think is my last shot at real relief. And that is a real shot in the dark.

Right now I'm trying 0.5 mg Requip occasionally on top of max Klonapin and Lyrica Doc will prescribe. I'm taking it on really bad nights but not all the time. When I was off everything 5 years ago Requip was amazing for a week then quickly failed. Increased dosages just made things worse. I'm trying to recreate that first week success. First night I didn't feel any different. I'm going to adjust how often I take it over next three months.

Last week my neurologist suggested acupuncture. He didn't no where I could find one but warned against commercial acupuncturists. LOL, where am I supposed to look, China?

Thanks for letting me vent. Always open to suggestions! Rick

[Rustsmith]

I guess I'll try Atlanta

In the last patient symposium, Dr Rye (Atlanta) was very outspoken in a discussion with Dr Earley about iron therapy for RLS.

So, I think that if I were in your position and was looking to get an iron infusion, I would try Dr Walters at Vanderbilt in Nashville or if you wanted to stick to the east coast, Dr Koo at Yale in New Haven, CT. Since you were thinking about going to Baltimore, you could drive there and then take Amtrak to New Haven or even Dr Winkelman at Mass General in Boston.

[badnights]

Rick, have you ever tried opioids? Hard in Florida, I know (not exactly paradise for medical things). It would require a wean off the clonazepam undoubtedly, and I recall you - well, you did that before, and I seem to recall you had some difficulties around that, but I can't remember if the withdrawal was hard or if it was just that nothing worked afterward.

[Stainless]

Steve, thanks for the leads. That's exactly what I'm looking for.

Badnights I have been prescribed Tylenol with Codeine and it makes me so constipated I can't imagine opioids but I have no experience with Methadone, etc. Living in Florida with our state government, I doubt very seriously I could get a script. Tylenol with Codeine is my silver bullet for horrible nights.

The closest neurologist / sleep doctor I haven't seen is in St. Pete, about 4 hours away. I would be willing since it is a nice place to visit but they have failed to respond to my email in a week. Maybe I will call this week. Why have a website with email links if you don't call patients back?

I did go through horrible 6 month nightmare getting off clonazepam followed by a year of failed attempts at relief. I've told that story too many times.

By the way, week 2 of my experiment with using 0.5 mg. Requip about once a week to take the edge off a bad night seemed to help last night. Better than nothing. First night was inconclusive but not a negative result.

[Yankiwi]

I take 120mg of codeine at night and also iron tablets so I am well acquainted with constipation.
What alleviates it for me is Benefiber, a heaping tablespoon in hot water or tea three times a day.
I prefer it to drugs but occasionally at lunch when I'm out I'll take a Coloxyl tablet which is socusate sodium and senna.
Good luck

[badnights]

I had a prescription for lactulose for constipation. It's not an issue anymore despite the opioid use since I changed my diet, but it was very effective when I was constipated at first. It's sticky sweet and I have no idea why it works.

[ViewsAskew]

Are plane trips something you can do? I flew to California for years before I moved here. When I was walking to Dr Winkleman (he does the opioid study) a few weeks ago, I said I didn't know what I'd do if Dr B retired. He said I could always see him. BUT, no idea if they will take out of state clients.

I swear, I'd make a friend of someone here who'd let you use their darn address in that state if they won't. Or network every friend I had for someone they knew who lived in the state I wanted to go to. This is insanity what you are having to do.

[Stainless]

I am really looking for a plan, not a prescription I can't get filled. Or give IV iron a try. I'd stay somewhere for a week or whatever to give it a try.

At 65 I'm very worried about what this will be like when I'm 80. My neurologist will prescribe anything he is allowed to in Florida. I saw a second neurologist who seemed much sharper, had no RLS patients and knew more than my current doc, but didn't want to take me on because he had no solution. They both said find an expert / university. Easier said than done.

Last night my legs were going crazy so I walked around the house a couple of times and to my amazement fell asleep. Reading works for me to. I need to get out of bed instead of laying there suffering. Rick

[ViewsAskew]

I am really looking for a plan, not a prescription I can't get filled. Or give IV iron a try. I'd stay somewhere for a week or whatever to give it a try.

At 65 I'm very worried about what this will be like when I'm 80. My neurologist will prescribe anything he is allowed to in Florida. I saw a second neurologist who seemed much sharper, had no RLS patients and knew more than my current doc, but didn't want to take me on because he had no solution. They both said find an expert / university. Easier said than done.

Last night my legs were going crazy so I walked around the house a couple of times and to my amazement fell asleep. Reading works for me to. I need to get out of bed instead of laying there suffering. Rick

I hear you - I did that initially. I'd stay with a friend who was about an hour from Dr. B and I'd get all the work done here (had to pay cash because my insurance was out of state). The expense and not getting a Dr to partner with the specialist is why I moved - I couldn't get infusions, etc. anywhere by me and I had to stay in So Cal once for almost 3 months. I tried SO many doctors locally. I just couldn't function and was so scared of what would happen as I would age. It's been TOTALLY worth it for me though I know it's not for everyone.