Visiting Dr today

[Artsy]

I go to the neurologist today and I'm going to discuss some things with him. I'm going to ask him if anything new has come along. I'm going to tell him what I have been doing to help myself lower my dose of Meripex. I'm going to get.50 meligrams of Extended release Meripex and still keep my.75 just in case I need it. I'm going to discuss my diet and see what he says. I have noticed in the past Drs will not dicuss it much they just do what they want to do and want really listen to the person that experiences this condition. I'm going to time how long he listens to me before he cuts me off and moves on. I believe they have no answers and they just add the medicine and really don't tell the person how hard this is to get off of and then they will turn you down on pain medication to get off of it. That's not right if they get you on it they should take responsibility and help in anyway to get a person off of it. Anymore before i start talking about RLS to any Dr I ask them have they ever experienced it before and so far the ones I have ask say no. So it's hard for them to really understand what we go through. Its unbelievable how painful RLS is. I call it pain and can wear on a person and all the side effects of the medicines are horrible. All we want is to be understood and helped. He turned me down last time on giving something for me to relax I as him for colazapam and he wouldn't dicuss it I thought really. Wow I would be scared to ask for any pain reliever stronger than Advil. I may ask him just to see how he reacts to me. If he treats me wrong for asking I will not go back. Thanks for this awesome group :)!

[Madlegs1]

Good luck- let us know how you get on. --- We are all agog.😎

[Hidden in reply to Madlegs1]

Morning madlegs! I went to a different gp yesterday. Having had 6 good yrs on cabergoline and 7 good years on pramipexole i think rather than augmentation my body has just got used to drug . I told him I want to try cabergoline again and very reluctantly gave me a prescription! My dilemma is if I remember correctly (it's on order ) you take it at bedtime but my symptoms have always started at 7pm so I will still have awful evenings? Maybe I could take it at 6 and hope I stay awake ! What are your thoughts?. I have also found a Dr Fackrell in Bath a neurologist who has an interest in rls if anyone is happy to pay !

[Madlegs1 in reply to Hidden]

Good that you got on well with your new dr. He seems to understand rls in his reluctance to put you back on a DA when you are showing obvious signs of augmentation. ( after 13 years on DAs , you have been incredibly lucky)

I have no experience of Cabergoline but it sounds quite nasty. Go easy the first few days- but you've been there already!

I hope all goes well with you-- we are watching your progress with interest. You are a trailblazer.😃

Cheers and best wishes.

[Hidden in reply to Hidden]

I think i left a comment for you about Cabergoline on another post from you. I looked on rlshelp.org and its not advised to take it because of heart problems.

[Hidden in reply to Hidden]

Angelaanddanny, This info is for you in case you do NOT know about the heart problems that have been connected to your new med This is taken from Dr. B's website.

Dostinex/{Cabaser outside the USA} (Cabergoline)

This is the latest of the dopamine D2 (also works on D1 receptors) agonist medications (like Mirapex and Requip above), but is only approved in the USA for the treatment of hyperprolactinemic disorders, either idiopathic or due to pituitary adenomas.

A recent study in the journal SLEEP (May 2000, Vol 1;23, pages 349-54) showed that this drug worked very well for patients with severe RLS who developed augmentation under LevoDopa therapy. Nausea was noted due to the drug, but Domperidone (the only anti-nausea drug that does not bother RLS and is not available in the USA) was used to take care of it. The average dose of cabergoline was 2.1 mg, with a range of 1-4 mg. In another study (presented at the June 2002 Sleep meeting) it was found that .5 mg of the drug helped nighttime RLS and a dose of 2 mg would give 24 hour relief. Another 2004 study found that an average dose of 1.5 mg per day worked very well in patients with fairly severe RLS.

Dostinex is supplied in .5 mg tablets. It should be given 2 hours before sleep. The most common side effects have been headache and nausea/vomiting.

More on this drug as reports become available and we gain experience her in the USA. This drug is used in much smaller doses for hyperprolactinemic disorders and is extremely expensive in the USA if used in the higher doses necessary for the treatment of RLS.

There have been reports of valvular heart disease occurring with Dostinex (Mov Disord 2004 Jun;19(6):656-62) similar to those caused by Permax. Both of these drugs are ergot derivatives (unlike Mirapex and Requip) and have been now linked to these problems

[Kaarina Administrator in reply to Hidden]

Hi Angelaanddanny

Thank you for naming Dr. Fackrell in Bath who has an interest in RLS. Members of this forum do not often name a medic that they have seen regarding RLS and found them to be of help. Have you been to see him?

[Jose651 in reply to Kaarina]

Hi Kaarina,

I'm a member of TUK.....Thyroid UK, and members report to an Adminstrator their experiences of consultations with ' Good' Doctors or Endocrinologists.

The names are kept on file, and an email to TUK office for the list, relevant to your area, is, sent to you, on request.

Saves wasting money, time and members getting frustrated with the service that so many have to endure.

Just a thought K, 😊

J 🍀

[Kaarina Administrator in reply to Jose651]

Hi Jose,

It is a fantastic idea but so few people appear to find good doctors of neurologists regarding RLS.

I wanted to see a good surgeon regarding scoliosis and like the TUK office, when I called SAUK I was given numerous names and phone numbers in the area I asked for and did go to see one and was very happy with the outcome.

So Jose, I totally agree with you and I am sure the Chair @RLS-UK would be pleased to hear from anyone who can recommend a good doctor or neurologist. I have passed a few names on to him as and when I hear about them.

Kaarina

[Jose651 in reply to Kaarina]

Hi Kaarina,

Thank you for your reply. 👍

So, you're a Volunteer on this forum, and a lovely one at that.

Is it possible to ask the Chair@RLS-UK to set up this provision for members.

I appreciate that few members experience satisfactory experiences with medical people regarding the awfulness of living with RLS.

As I say, it may help if such a provision could be set up.

J x

[Kaarina Administrator in reply to Jose651]

Hi Jose,

I shall email Daragh with your suggestion.

Kaarina

[Jose651 in reply to Kaarina]

Cheers K

😘

[Kaarina Administrator in reply to Jose651]

Josie,

When this very question was asked on the RLS-UK FB page in February, there were only three replies from members recommending two doctors who were sympathetic but not RLS specialists and one Doctor in Germany. There are, to date, 10,000+ members on the RLS FB page so I do not hold out much hope that we get a very long list of recommended RLS specialists/doctors.

Kaarina

[Hidden in reply to Kaarina]

There MIGHT be a few neurologist who KNOW more about RLS than some doctors in the UK. Some of our members night be able to recommend to you Kaarina. RLS specialists i think are almost nil in the UK. And its hit and miss with our doctors here.

[Kaarina Administrator in reply to Hidden]

Dr Kirstie Anderson from Newcastle who runs the Regional Neurology Sleep Service with a clinical and research interest in all the sleep disorders spoke at the recent AGM and she was excellent and came across as very caring and enthusiastic. I believe someone on this forum recommended Dr. Anderson after an appointment with her. I very much hope she will speak again at another AGM in the future.

[Jose651 in reply to Kaarina]

Thank you K for that information.

Very sad situation for fellow suffers.

J 🍀

[Hidden]

Good luck Artsy. I hope its a good appointment for you.

[Kaarina Administrator]

Hi Artsy,

I too hope that it is a good appointment for you. You appear calm in your message and have set it all out brilliantly in your mind and to us. I just hope that the doctor and you can work as a team. If he at least listens, which he should do as that is a sign of good doctor, even if he does not agree with it all . What you are saying makes complete sense to me. I do hope you can both discuss all this amicably.

Power to you Artsy,

Kaarina

[Shaft1952]

Would you be prepared to travel as you can ask for refferal to some one with interest in RLS. I hope you get on OK. Cheers

[John_naylor]

I thought I read about Cabergoline not being prescribed any more (perhaps in US?) or am I dreaming?