Restless Legs Syndrome (RLS) Discussion Board

Having recently moved from Chas SC, there are two doc, Doctor "L"and and a podiatrist Dr. "G". They have a thought process that weekly injections in the top of the foot, and I mean both. May just curve the RLS. Then if after three weeks or these daily injection a surgical p[procedure Morton's Neuroma Release may be beneficial. I was the the first guinea pig and needly to say there has been not changes what so ever.

My lasted delima is my new neurologist has suggest there us demylination of the nerve sheaths. Any one hear of this and fell free to pass to Dr. B for further comment. Being as NONE of the DA work and only my Opana ER 40 mg 3 X perday work. This is their thinking, IMy new neuro has placed me on Klonopin 2 mg three times daily and have started a slow upward taper of lamictal.

Ineed to mention also that b/c insurance raised my retail rate up to $80.00/ month and now want me to use mail order serevice at $100.00 for a three month supply of my Effexor XR 225 mg q day. I have been off my Effexor 3 weeks now. Boy has this been a trip.



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p.w., welcome to our rls family. i, for one, have never heard of any surgical procedure claiming to "cure" rls let alone the two that you have mentioned. now, i know that there have been numerous posts stating that surgical procedures, particularly back related ones, seem to have precipitated or worsened an individual's rls. or, it may be that a secondary condition, if surgically corrected, may perhaps result in some rls relief--but can't think of many posts on that point. Mmmm, and applies to all of us--myself included--, but the adage "fool me once....." just may be applicable. just my opinion.

again welcome and best wishes,

m.

Painful wiggies, am I understanding that the doctor's don't think it's RLS at all? That it's really a different problem?

I know they say that the DA should work on everyone...but how do they know? I mean, they know that there are at least 3 different genes for RLS and these could combine. We easily could end up with several subtypes of RLS and one of them might not respond to DAs...of course, that is just speculation.

But, since the DAs do seem to work on most people (there have been a few others here on whom they have not worked), maybe it isn't RLS. One person here a long time ago...the DAs didn't work. Turned out she had RLS, but had some other problem and that was much worse than the RLS. So, that's why the DAs didn't seem to work. Maybe the same is with you.

I hope they find out soon. It's so hard to go through this not knowing crap.

Welcome back my dear,

You know Ann has a good point, you could be like me .......a medicine opposite.

Meaning that most of the popluation is given to certain response to medications. I always seems to response in the opposite way.

Your pains meds work, they should understand that they work for many of us. Or maybe they don't like that they work, that could be the problem, one would need to prescribe it for an ongoing time.

I had those injections, in my foot as well, long before I ever heard of RLS.
Like you, they did nothing, except for the unforgiving heartburn.

The Effexor could be making the RLS worse, and I'm sorry it's been so hard to get off of it.

Yes I've heard of the sheaths wearing away, but I ditto Ann, in saying that they must not know or think this is RLS. As if your nerves are really breaking down, that is IF? then they might need to look further into it, but RLS can be different, even slightly for all of us. So if in your heart you know that it's RLS and all the other stuff they are claiming is not true, with testing to provide the proof........then fight for what works.

Lynne

The docs are thinking that untreated neuropathy has caused my to have the RLS symptoms and anxiety of an underlying cause. I have not been taking my Effexor for over three weeks due to my extortionist prescription company.

Right now as stated earlier they put me on 2 mg klonopiroblem besides 72 hour1/2 life. it has turned me in to a monster. really crappy attitude. I now am going to try the klonopin at bedtime at the request of my neuro. We will see how this goes. I will keep going on the upward slow taper of thr Lam,ictal.

My difficulty with them saying maybe not RLS is I have the urge to move when pain is present

ViewsAskew wrote:P

ainful wiggies, am I understanding that the doctor's don't think it's RLS at all? That it's really a different problem?

Yes that is the thinking. Alsao refer to my later post.

I imagine it's possible to have both problems simultaneously. They may not be thinking that. If movement makes it go away, it sounds a lot like RLS. With the other problem, does movement make pain go away?

ViewsAskew wrote:I imagine it's possible to have both problems simultaneously. They may not be thinking that. If movement makes it go away, it sounds a lot like RLS. With the other problem, does movement make pain go away?

Yes it does.

painful wiggies wrote:

ViewsAskew wrote:I imagine it's possible to have both problems simultaneously. They may not be thinking that. If movement makes it go away, it sounds a lot like RLS. With the other problem, does movement make pain go away?

Yes it does.

only the leg pain/arm pain are releived by the excessive wiggie giggies. Not the other pain

Well I have more than one painful condition right now, as well.

Moving does not help the non RLS pain, BUT moving does help the RLS.

So, I'm thinking still along with Ann that both could be present and they aren't hearing that.

I would still want to know what was going on, if anything other than RLS or plus RLS, regardless.

I''m sorry I did not read your first post well enough, my brain is too many places, and none of them here in my body.

I do hope the best and I sure hope that the docs wisen up greatly for you.

Lynne

Since moving doesn't make the other pain go away, like Lynne, it only makes sense that RLS is probably there. It may not be the only thing (and it might). How to get them to see that...that's a different animal altogether!