Seeing RLS specialist neurologist tomorrow

So I'm seeing a rls specialist neurologist tomorrow after year of meds and I am hoping to have some solutions. I would like to ask him what my levels of magnesium, thyroid and ferritin should be. Can anyone think of anything else? I would like to come off of the pramipexole. Anything I should ask for?

Thanks everyone xxx

19 Replies

  • Well Sara good luck with the neurologist I hope you get some good answers they don't seem any better than the docs I take mag salts in the bath wouldn't be with out them,my ferritin is fine but the rls is still a B. What I don't understand is all the people that have rls I don't know anyone myself that has it ,does any one know someone with it ,let me know x

  • at less 2 of my brothers and my sister and some of my friends act like they have the began of it.

  • Good luck with your appointment ,will you let us know how you go on? As far as I know thyroid levels should be within the normal TSH,T3T4 levels as they should be for anyone whether they have RLS or not,Ferratin should be over 70.

  • Good luck. I would be interested to know what s/he says about magnesium levels because there seems to be no definitive answer to this.

  • There have been no studies about magnesium and RLS. Its just i think a matter of taking it helps some and not others.

  • That's what I thought. I've been thinking it may be worth a try but have no idea about the dose.

  • I would take the smallest amount to start with. Magnesium can send you to the loo in a hurry if too much is taken. Work your way up with the dose, you will know if you have taken too much. :)

  • Cheers Elisse. I think I'll give it a go. Take care.

  • Ask what causes it in the first place and what can kick it off

  • This link will inform you of the whys and whats of RLS. There are two types of RLS, Primary and Secondary. Primary is what most people have Secondary is caused by some conditions or a medication you are taking.

    Its a long read but gives some answers to what you have asked.

  • I wonder where you are going? I am "under" Kings College London, who now phone me twice a year. They really only seem interested in meds and either suggest something, or I do...the hows or whys seemed unimportant to them. I feel that they are only interested in statistics. However see how you get on . They must surely have so much info, being the experts in England. At least they will prescribe some things that perhaps your doctor doesn't know about. ?? I will be v.interested to hear about it as I would like to get off pramipexole too.

    Good luck

  • The meds available that can be used for RLS, are limited. So, doctors are limited to what they can use which might help us. All doctors should have in front of them what can be used for RLS. Getting off of pramipexole could be done with your own doctor's help if thats what you want. There is no easy way to do that, and will take a strong pain med to help your through the withdrawals. One member on here did it a little while ago and she can give you her experience of how she did it that, member is p1pp1ns2.

  • There are dozens of preparations that have some effect on RLS and each doctor who recognizes it as a problem has a different approach. They haven't done enough research to have a good grasp on the subject.

    Parkinson's disease is relatively small compared to RLS and every neurologist knows lodes about it. RLS affects 10% of the world population and most doctors cannot see it as a major disease. Yes, it is a disease. (dis'-ease) Anything that disturbs your ease is a disease.

    If we could have the resources devoted to RLS that Parkinson's has had, we'd all be at ease already. Good Luck and I hope your doctor is better informed than any I've seen, who are using meds developed for other illnesses, on a hit or miss basis.

  • So I think I was as well informed and experienced as the rather kind but relatively unhelpful neurologist. My iron levels are 39 so finally someone agrees that I should be taking prescribed iron. He had no comments to make about calcium, magnesium, b6 or b12 but said they can't hurt as supplements. He is writing to my gp to suggest an opiate prescription for my withdrawal of pramipexole however he thought that since my symptoms respond to pramipexole I have a simple rls diagnosis and really should accept it. He did suggest that I could try gabapentin instead of pramipexole once I have successfully stopped the pramipexole. He at least understood my augmentation concerns and withdrawal anxieties. I guess that's a start x

  • Well yes, we have to accept we have RLS, as there is no cure, so we treat it the best we can. Lets us know how you get on with the Pramipexole withdrawals we will be here for when you just want to rant. Alot of people take Gabapentin successfully for RLS, but like all the meds, its trial and error to see if it is for you. You might find the opiate you are given will take care of your RLS after the Pramipexole withdrawals are done. Good luck. x

  • I only personally know one other person that has RLS, but the description that he gave me of his symptoms doesn't sound EXACTLY like what I feel. I guess it can be a little different for different people?

  • The most important symptom to have to diagnois RLS is the urge to move. Other symptoms can vary from person to person, or they describe it differently to you. Some say its creepy crawly, or like a electric shock, etc.

  • Ask your doctor about taking ropinirole. My wife takes 4 MG three times a day. It helps her. RLS.

  • thumper1234, are you sure you have your wife's dosage right. ? 4mg three times a day, is 12mg. That is what someone with Parkinsons would take. Its way to high for someone with RLS. It will stop working and your wife will suffer with augmentation and she will need to get off the Ropinerole and that will be extremely hard to do. She probably has already suffered augmentation if she has got to that dosage. The old dosage used to be 4mg a day. The new dosage is now only 1mg a day.

You may also like...