Thank you Jesus!: I had an appointment... - Restless Legs Syn...

Restless Legs Syndrome

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Thank you Jesus!

Mona7 profile image
30 Replies

I had an appointment with Dr B today!! I'm so relieved after 6 yrs suffering, trail and error with PC and neurologists who dont know enough about RLS and now confident that together we'll figure out the right med combo that I might sleep longer than 3 hrs block. I'm thankful to have found this blog and to you all who suggested contacted Dr B.!!

Bring on the good night sleep! Thanks everyone 😍

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Mona7 profile image
Mona7
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30 Replies
martino profile image
martino

Amen! Dr B wrote in a book that every RLS sufferer can be helped. If only other Doctors realised this and had the patience required to try.

I am not a Jesus type of person, but in your case, so happy you saw Dr. B and i know he will sort you out, you have seen one of the best. I wish we in the UK also had a Dr. B.

Nottsali profile image
Nottsali in reply to

If only human cloning could get the go-ahead!

in reply toNottsali

Wouldnt THAT be something. :D

Mona7 profile image
Mona7 in reply to

Yes, I too wish you had access to Dr B!! I SO understand your pain. Theres another good rls specialist at John Hopkins of Baltimore, but still over the pond.

in reply toMona7

Yes that other one is Dr. Early. :)

LotteM profile image
LotteM

I am happy for you.

So.... what did you discuss and especially what did he suggest?

Mona7 profile image
Mona7 in reply toLotteM

He suggested 5mg methadone twice a day, along with sinemet 25-100 only for break through symptoms at most 3 times a week as not to augment. However, I've NOT gotten my scripts as in the US theres supposedly a opioid epidemic and pharmacists can deny filling the script. I've got a head pharmacist who says methadone ISNT a treatment for rls. Ignorance is bliss! Also, insurance is questioning it too. So it's not smooth sailing as of now.

nightdancer profile image
nightdancer in reply toMona7

OH NOOOOOOOO!! I work with the pain community every day, and this is the kind of story we hear every day. We are fighting and fighting this BS of pharmacists overriding doctors. They need to let doctors treat their patients, This makes me so angry and sad for you. Call Dr. B, if you have not, and tell him what is happening. Pharmacists and insurance companies are making it harder than it needs to be! :( You can PM me if you want to. I work with this 24 hrs a day, more so than just RLS now, because of these problems.

Mona7 profile image
Mona7 in reply tonightdancer

I've complained to the store and called the corporation of the store pharmacy and file a complaint over the phone. Come Monday, someone is going to get the script filled for me! If not, I'll be sending you a message. Thank you for offering to help.

Joolsg profile image
Joolsg in reply toMona7

Really hope the pharmacist is overruled! Fingers crossed for you.

Smiler53 profile image
Smiler53

So pleased for you. What medication and advice did he give?

Mona7 profile image
Mona7 in reply toSmiler53

Plz read my response on LottM page.

Joolsg profile image
Joolsg

Also not a Jesus person but Dr B is an absolute star. So pleased you saw him & confident his scientific expertise will help you sleep and deal with the pesky RLS symptoms.

BJMLE profile image
BJMLE

Who is Dr. B? I am in the US.

in reply toBJMLE

Look at this website which is Dr. B's you will see who he is. rlshelp.org

LotteM profile image
LotteM in reply toBJMLE

Dr Marc Buchfuhrer. California. One of the main RLS researchers and practising medicines and seeing patients as well.

Tennwalker1 profile image
Tennwalker1

Mona7, so excited for you. Just knowing you'll be getting more then 3 hrs a night thrills me. I've been there done that weaning off Mirapex. Its was horrible. Prayers you'll be finding the right medicine combination soon. God bless.

Mona7 profile image
Mona7 in reply toTennwalker1

Thank you.

FLAME43 profile image
FLAME43

stay blessed

Suhavard profile image
Suhavard

Wonderful news!

Mona7 profile image
Mona7

I'm in California, US about an hour and a half from Stanford.

nightdancer profile image
nightdancer

Well, you can thank Jesus or whoever you want. :) Call Dr. B back and tell him. This will not be the first time he has run across this problem, I am quite sure,. xx

Mona7 profile image
Mona7 in reply tonightdancer

I called Dr B's office and left a msg on Thurs. for the medical assistant alone with sending a message through patient portal back on Monday night. This coming Monday I'll call and leave a msg for Dr B and Dr Gibbson.

martino profile image
martino

Sorry about the delay. I am in England.

Mona7 profile image
Mona7

The pharmacist delayed by 3 days sending out the authorization for doc and insurance just because he could! Then lied about the date. He delayed it a few more days asking for a treatment code that would take minimum 48 hrs after doc and insur approved on the 8th day. I confronted him in his behavior on the 9th day and he refused to fill. This our reality!! Now, starting over at my old pharmacy who knows me better. Well see!

in reply toMona7

How frustrating.!! Good luck with your old pharmacy.

martino profile image
martino in reply toMona7

Hi

I have just been re reading the thread and wondered whether you got sorted? How are you getting on with the methadone, assuming you got it. I am curious as Dr B suggested it to me but at the moment the cocktail I have is ok.

Mona7 profile image
Mona7 in reply tomartino

No one has reply to pain help. I'm thrilled with the methadone! First time in 6 yrs and all the Parkinson's drugs available and Hydrocodone that I'm not having rls episodes everyday. I've had 4 episodes in 3 mons!!!

martino profile image
martino in reply toMona7

That’s fantastic. Enjoy it!

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