Neurologist or not?

[Nightdancing]

Hi. I live in the UK and I've had RLS since I was 17, I'm now in my 60's. I was given the diagnosis by my GP. I don't disagree with the diagnosis, it's just I wonder if it would be better to be under the care of a neurologist. Can I ask what care and support you receive if you are seeing a neurologist.

[MrVimes]

My experiences are similar to yours - e.g. age it started and my current age. I did get to see a consultant in 2002 for a couple of appointments. He put me on Mirapex, which was like a wonder drug, so I did not see him again. I am now unable to ween myself off of Mirapex, and we now know that he should not have used it as the first option. Given all the information in the public domain that we can research for ourselves, I am not sure how a consultant could add anything. When I speak with my Doctor (which does not happen often), I do all my research and tell them what I want to happen. Generally, they tend to agree with me. In my last conversation with a Doctor (I always get a locum), she said, 'well, you probably know more about RLS than I do'!

[Madlegs1 in reply to MrVimes]

And no-one in AnkhMorpork could have given a better reply.

[DogBella in reply to MrVimes]

I have a similar situation. Most of my research brings me the most help.

[Guitarpickin]

My GP has been more helpful than my neurologist, by far. But the neurologist ordered a bunch of expensive tests to rule out other causes.

[SueJohnson]

On your profile page, you list gabapentin, ropinirole and pramipexole. Are you taking any of these now? Have your had your ferritin checked. Have you read the Mayor Clinic Updated Algorithm at Https://mayoclinicproceedings.org/a...

[Nightdancing in reply to SueJohnson]

only taking the Gabapentin now. Started experiencing RLs early evening so felt it would be an idea to have a holiday from the big guns. Never had my ferritin checked, probably because I have never been anaemic?

[SueJohnson in reply to Nightdancing]

It doesn't matter that you are not anemic. And ferritin that is normal for other people is not normal for those of us with RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45%. If your transferrin saturation is OK, then if your ferritin is less than 75 take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day preferably at night at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you may need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.

[agapepilgrim]

neurologist wanted me to use Botox treatments but when I went to Botox specialist I underwent bad painful test feeling like a taser gun on my legs. Then she said it wasn’t a nerve problem and Botox wouldn’t help. So, I researched and found magnesium supplements was the most reported successful treatment. Muscle relaxants given by primary helped for many years, but by 72, that med was causing Syncope. So stopped that med. Sometimes my electric therapy massager from MED massager.com helps a lot by getting more oxygen in legs. Sometimes, I even have restless arm syndrome! Now I take 4,000 mg magnesium citrate and Calm powdered drinks.

[Sunshine458 in reply to agapepilgrim]

I have IBS along with RLS and I get severe diarrhea with every magnesium I have tried. I am 73 and I have suffered with both as long as I can remember I think I have tried everything imaginable. I am still on low doses of Ropinirole (2-3x a day) I cut 0.5mg in half and just keep as low of a dose as possible in my system and I take 1 mg colanzapam (bedtime only). I have been reading a lot about Gabapentin and I am going to ask my gp if I can try it and show her the Mayo Clinic information next week. I am not concerned about addiction at my age I just want relief and some quality time. I would never wish this on my worst enemy!!

[agapepilgrim in reply to Sunshine458]

I hope gabapentin will help. Doctor did try tgat for me but I was allergic / shut down my bladder.