Two very different doctors' visits

[2BassetMom]

My restless legs have been getting worse over the last several months. I had an appointment with my neurosurgeon who is treating my back/hip pain last week. I brought up the subject of my restless legs to him again and this time he really listened. He wanted to know how I have been dealing with it and what I've tried. I told him about my research on this forum and also the RLS Foundation. He said maybe it was time to send me to a neurologist but then said no, I probably am more of an expert of RLS than most doctors. Have you ever heard of such a response? Made me feel validated. We discussed how the RLS seems to bring on the back/hip pain and he said he is sure they are neutrally connected. Since my primary care doctor is addressing this issue he is not going to treat it himself. Saw my primary care doc today and was a bit disappointed. He prescribed Mirapex a month ago but after going home and looking it up I found it was in the anti agonist group. I get augmentation with this class of drugs. So I explained that to him today and he said Mirapex isn't in a class that it was all by itself. He then looked it up and had to backtrack. He acknowledged that my lack of sleep is interfering with my quality of life and was sympathetic. I have been prescribed another drug of which I have forgotten the name. Starts with a c. I will pick it up tomorrow. I'm getting discouraged and wonder if I will be able to find a way to sleep more that 1 1/2 hours a night. I think because a doctor can't fix this easily or just prescribe a pill that they would rather not deal with it. My primary care doc is a compassionate man but he kind of slipped up here. Understandably so. I am encouraged and comforted by being on this forum. It helps in the wee hours of the morning.

[Rustsmith]

To me, the reaction of both of your doctors was very refreshing. Your neurosurgeon was willing to admit that you know more about RLS than he does. I have had that happen with one doctor. It was a neurologist who conducts exams on me as part of an Alzheimers research program that I participate in as a control subject (i.e. I don't have Alzheimers). As for your GP, the fact that he was willing to admit a mistake is very encouraging. Please let us know what it is that he prescribed. Now that you established this role with both doctors, you should at least consider providing your GP with info from the Foundation about treating RLS or even provide a copy of the book "Clinical Management of Restless Legs Syndrome", 2nd edition, by Henning, Buchfuhrer, Allen and Lee. It is available on Amazon for about $30.

You might also consider trying to locate a neurologist in your area who is familiar with treating RLS, which can be a challenge but might ultimately be worth the effort.

[leggo_my_legs]

Basset,

So sorry to hear of your struggles. You are not alone. I also have back and hip pain. I hope you can find a doctor you're happy with.

Is the drug clonazepam? Hopefully whatever it is helps you.

[2BassetMom]

The new drug is Sinemet I haven't picked it up from my pharmacy yet. I had cataract surgery today and we drove right by the pharmacy. I'll pick it up tomorrow .

[Rustsmith]

Sinemet is the trade name for Carbidopa-Levodopa. Although it is very effective in its ability to quickly control RLS symptoms, it is generally not used as a daily treatment of RLS because it is much more likely to cause augmentation than Mirapex (pramipexole), Requip (ropinirole) or Neupro (rotigatine).

According to the Foundation's publication on RLS medications, Sinemet is generally not for daily use due to the increased risk of augmentation. Immediate-release Sinemet can be very effective when used only occasionally because it works within 15–30 minutes. Fortunately, the risk of developing augmentation is low when taken infrequently.

So, if you were concerned about augmentation on pramipexole, you should be doubly worried about Sinemet if the recommendation was for you to take it daily.

Since your GP appears to be willing to do the right thing, I would recommend that you take a copy of the Foundation publication "Medications and RLS: Patient Guide" to him. You need to be a member to get this document, but this document alone might be worth the cost to you of an annual membership.

[leggo_my_legs]

Also the member webinars are excellent!!!

[Yankiwi]

I found Sinemet great for almost immediate relief in a movie, car or concert but I augmented on it very quickly when used daily. I confirm the Foundation's stand that it is not for daily use.

[2BassetMom]

I'm grateful for this good information. I will post more soon, I just had cataract surgery and have the protective cage over my eye. I will see much better tomorrow.

[2BassetMom]

I plan to join the RLS Foundation. The publication will be worth it. I feel that my doctor doesn't see the need to research the meds and that I don't have any credibility. Tuesday I have an appointment with the PA for my pain management doctor. They have decided to wean me off of opioids slowly but this isn't addressing my back/hip pain or RLS. It is so frustrating to be in this position. I have a copy of the Clinical Management of Restless Legs Syndrome and I am highlighting the sections that advocate the use of opioids for RLS. I find that opioids are the only drug that gives some relief. Another tool for relief that I found was a heating pad for the car. I often get restless legs traveling from the city where my doctor is 45 minutes away. This helps to calm them down. Most nights I can handle the interruption of sleep but some nights like tonight all I want to do is cry. Sorry for rambling.

[ViewsAskew]

I plan to join the RLS Foundation. The publication will be worth it. I feel that my doctor doesn't see the need to research the meds and that I don't have any credibility. Tuesday I have an appointment with the PA for my pain management doctor. They have decided to wean me off of opioids slowly but this isn't addressing my back/hip pain or RLS. It is so frustrating to be in this position. I have a copy of the Clinical Management of Restless Legs Syndrome and I am highlighting the sections that advocate the use of opioids for RLS. I find that opioids are the only drug that gives some relief. Another tool for relief that I found was a heating pad for the car. I often get restless legs traveling from the city where my doctor is 45 minutes away. This helps to calm them down. Most nights I can handle the interruption of sleep but some nights like tonight all I want to do is cry. Sorry for rambling.

I hope it helps, 2BassetMom. I am having one of those nights myself - I understand how frustrating this is.

[2BassetMom]

Thank you for understanding. I went to the Managing Your RlS link and found it so helpful and full of information. I plan to read more when I am awake during the night. I might have to bite the bullet and give up my 1 real cup of coffee in the morning. I definitely am eating far less chocolate than I used to. I think it is time to find a specialist also. I'll see what kind of help my pain management doctor's PA offers and most importantly how she listens. I see her Tuesday.

[Polar Bear]

Insomnia is so horrible and lack of sleep is unkind to us in many ways.
There aren't many of us here who know a good night's sleep...... and generally, if we get some sleep it is likely to be medicated sleep.

I agree with you and find also that opioids work very well for me, although they can also be 'alerting' and so can work against us when it comes to sleep.
In my case, rls symptoms may be controlled but I'm wide awake, recently until about 5am. Certainly getting through a lot of reading material.

Last week, early afternoon, while waiting in my dentist's waiting room I was reading my Kindle.
Thump !! that was my Kindle hitting the floor because I had dozed off. It was almost funny.

Good luck with your appointment. I hope your Pain Management doctor/PA has knowledge of RLS.

[ViewsAskew]

I am so grateful for the folks here who share their time, information, empathy, and ideas. Not sure if I ever would have figured out some of the things I have. As many people have found, opioids are terribly alerting for me, but only initially. When I take them earlier than I would - and I mean WAY earlier, they make me extremely sleep AND control the RLS. Now that I have the timing figured out, I no longer am up at 3, 4, 5 AM unless I am having a bad spell.

[2BassetMom]

I
am up with a bad episode tonight or I should say this morning. I decided to give the medicine that my primary care doctor prescribed, Sinemet, so I could let him know how it affected me. It has done just what I thought it would do. After barely a week's worth it has caused me to have a very bad night. I took 1/2 oxycodone tablet in hopes it will help. I find that this works best and doesn't seem to be alerting for me. Sleep aids do the opposite, I feel as though I am running a marathon with them. Anyway, that's the situation this morning at 12;35. I can relate to your story of falling asleep in the dental office Polar Bear. My daughter and I go to a Bible Study every week and during the lecture she says I write in my sleep. I tell her it is a gift!

[Polar Bear]

A gift indeed. Often when I am doing a crossword or sudoko I suddenly discover pen lines over the page like a snail's trail.