2 weeks off

[Njbva]

Two weeks off requip.... gone on for a sleep study, no results yet. Contacted Dr. Andrew Berkowski. He can't see me until next week. Will cost close to 1000 $ but worth it if I get help. My symptoms have gotten worse. Legs start within 10 minutes of laying down. Mostly my left leg. Gone from just jerking to painful also. Stopping my Low dose Naltrexone in order to take opioids (suggested by Dr andrew) very sad and dark here. Tried ice pack, heat, massage, wrapping my legs. Does this ever end? Have an appointment with b a local nureolgist but probably will not keep as he will have old ideas?

[SueJohnson]

Since you are going to see Dr. Berkowski you don't need to see a local neurologist. The opioid should help. Hang in there.

[Njbva in reply to SueJohnson]

That is what I was thinking. Local neurologist would probably be useless

[Njbva in reply to SueJohnson]

Does propranolol make RL worse?

[SueJohnson in reply to Njbva]

No - it is safe.

[Njbva in reply to SueJohnson]

Know anything about serraenzyme?

[SueJohnson in reply to Njbva]

It's safe for RLS. It helps inflammation and may help pain and swelling.

[Joolsg]

Dr Berkowski is brilliant. He will definitely prescribe an opioid like Buprenorphine.Your RLS will settle. The first 2 weeks after stopping requip (Ropinirole) are the worst. But every day will get a little better.

Hang on until next week. Dr Berkowski will help you.

[Njbva in reply to Joolsg]

Thank you so much. I am encouraged by all of you. Thank you Sue johnson you give hope to so many.

[Tildabri]

I don't understand why these consultations cost so much money. I know that most people think that Dr Berkowski is very good, but what is he doing to justify $1,000 for a consultation? It's definitely health only for those who can afford to pay (a lot).

[Oscarcat63 in reply to Tildabri]

He's in the US medical business.Say no more.

One of the reasons the doctors where I am will shut down if I mention research from the US - the Evil for profit healthcare system.

*snarkasm*

(Yes, he is supposed to be very, very good)

[Njbva in reply to Tildabri]

Here in the US I have fabulous insurance. Pays for just about everything. This doctor has chosen to go independent. Which means his income is much greater than a doc who is in a hospital contract AND he can think and act "out of the box. " I could probably find a neurologist who is with one of the major teaching hospitals and get the same information paid for by my insurance. Looking into that too. I guess that is called .... capitalism. When big money is paid you conceivably get big results? Money is the root of all evil? That is why alot my doctors in the US are from other countries. That being said... this is the system we are stuck with . Trying to work it as best I can.

[Tildabri in reply to Njbva]

Thanks for the explanation. I'm in France, where the situation is very different. In any case, I really hope the consultation goes well for you.

[SueJohnson in reply to Tildabri]

Most don't charge anywhere near that much and insurance including medicare may cover most of it. My doctor charges $206 and after medicare I paid $20.48.

Dr Berkowski doesn't take insurance.

[Njbva in reply to SueJohnson]

Sue... melatonin good or bad for rls?

[SueJohnson in reply to Njbva]

bad

[Njbva in reply to SueJohnson]

I was reading Dr Berkowski's web site.... I did understand I will pay him $850. For 90 minutes and will get a comprehensive plan to give to my gp on how to proceed forward. I did not understand If I want him as a concierge RLS doctor I have to pay eight hundred dollars a month for 5 months. I am asking anyone out there.. is he really worth it or would the hospital that trained him, U of M , which is in my state, be just as good and be paid by my insurance. Not taking away anything from him but maybe I can get the same care for a lot less money? Last night was day 16 and I was much better. Only slight twitches, and no sleep, which is easier to handle. Each night brings its own ...

[SueJohnson in reply to Njbva]

I previously gave you 2 names and they would both be good and a lot cheaper.

[Njbva in reply to SueJohnson]

I will contact them tomorrow. Again, thank you sooooo much

[Njbva in reply to Njbva]

Sue... my gp wants to give me trazodone???? For sleep until I can see my neurologist. What do you know about that?

[SueJohnson in reply to Njbva]

It's fine. It's primarily for depression and anxiety but also treats insomnia.

[Njbva in reply to SueJohnson]

Well.... that was a hot mess. You are spot on as always Sue. It did not make my legs worse. But. My rls ignored the trazodone and I was just groggy, dizzy and unsteady. Not that I expected my rls to get better. The doctor thought maybe my sleep would be deep enough to not wake up for the party ! The party continued.

[SueJohnson in reply to Njbva]

I am so sorry. Perhaps a lower dose. Or ask for lunesta which is what I take for a different problem that won't let me sleep.

[Njbva in reply to SueJohnson]

I think this is my normal until my brain resets itself. I have a good therapist who is seeing 2 times c acweek for now.

[Njbva in reply to SueJohnson]

Thank you again Sue... I made an appointment with the doc from UofM you recommended. She is at the same hospital Dr. Berkowski trained at. I have confidence she will be just as good as he is

[RLSSCARER]

Without reading everything, or knowing your age, diet is always a difficult one, and how your body/blood type absorbs different foods, water, i found that drinking some demineralised water pulls toxicity out of the body, drink before bed, , water heated to 60 degrees, about half way to boiling point, mix in Upto half teaspoon of bi carb soda, then drink 30 minutes before breakfast and lunch.

Sleep, insomnia is often associated low serotonin, eating more turkey and chicken or alternatively, 5htp grifonia extract, moringa is good, or ask your local health care nutritionist what they recommend, thyroid health, fish head soup will be the best, regular lymphatic circulation massage, terahertz therapy wands, sustainable biomedical therapy to reduce pain are affordable on ebay, crystal magnetic therapy mats are a useful tool that van also provided many years of relief, olive leaf extract, and ural, urine track infections, can start and go unnoticed and cause Dysfunctional disorders including encephalitis and end of life encephalopathy, treat all types of infectious diseases, fungi, parasites and yeast bacteria. The Bi carb soda will help, Celtic sea salt, gargle to kill tongue and lung bacteria.

Kava Kava is good for some people, blue lotus tea, Blackstrap molasses for iron, Sauerkraut for some people helps the stomach, shi hu, is a herb the has been use to nurture and give strength to the stomach,, mangosteen has good antioxidants, sleep frequency music may also help.

[purple-flowers]

I’ve taken everything there is to take. Opiods are the only pills that help. 5mg long acting oxycodone in the morning and then 10mg of the same in the evening. Sometimes I have to take an extra 5mg during the night. Oh blessed relief at last!