Hello from IN!

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Jeff
Posts: 29
Joined: Fri Jun 12, 2009 12:04 pm
Location: Greenfield, Indiana

Post by Jeff »

They've ran every other test except an MRI.
I dont think I could be still long enough for one of them anyways. :lol:
I'm trying to stay openminded about this but it's getting to the point to where I want something that's going to fix the problem now and no mumbo jumbo..
It's very frustrating that for the past 3 months, Ive only gotten 4 hours of sleep each night..
Now my body is compltetly feeling it big time..
Im weak all over, it takes me several minutes to get up my steps at home, I cant perform my job right anymore, and my memory isnt the same..
Gotta all be from lack of sleep and Im frustrated with it and rightfully so..
I might call the Neuro in a minute and see what else we can do because this is ridiculous..

Sojourner
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Joined: Tue Dec 05, 2006 5:56 am
Location: USA

Post by Sojourner »

J, It's an awful thing you're going through. Getting a diagnosis and a correct diagnosis is sometime very difficult. I know how getting just a little sleep can be maddening. Be persistent in getting your questions answered. Best of luck, my friend. M.
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SquirmingSusan
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Location: Minnesota
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Post by SquirmingSusan »

You said that you were thinking of trying a sleeping pill to at least help you sleep. What has stopped you from trying that? I'm guessing you know this, but steer clear of OTC sleeping pills. Prescription sleeping pills like Ambien or Lunesta shouldn't bother your RLS, and may at least help you sleep.

Diagnosis or no diagnosis, tell your doctor you need symptom relief if nothing else!
Susan

Jeff
Posts: 29
Joined: Fri Jun 12, 2009 12:04 pm
Location: Greenfield, Indiana

Post by Jeff »

I've only been to the Neuro once since joining this forum but next time I go I'll mention something to help me sleep.
I'm starting to think maybe this is Refractory RLS since Ive had no success with the Requip or the Sinemet..
I intentionally missed my 10 o clock dose of the Sinemet tonight just to see what would happen..
Now of course the symptoms are there but Im not feeling as bad as I was when on the med..
My heart's been beating kinda funny too tonight and Ive been lightheaded but that shouldnt be a big deal..
I did get a call back from my Neuro's nurse today and she said she would have to talk to the Neuro but maybe I needed an upped dose..
I say BS after all Ive heard about that med..
Im gonna try to get in sooner and bring that Algorithm..

Jeff
Posts: 29
Joined: Fri Jun 12, 2009 12:04 pm
Location: Greenfield, Indiana

Post by Jeff »

Well, the Neuro's office called and she wants me to double the dose of Sinemet Im already on..
Should I follow that or will it make matters worse?

SquirmingSusan
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Post by SquirmingSusan »

I guess if it were me, I'd give it a try. I have 2 reasons for that: 1) Dr. B said that if it wasn't working it was either too low a dose or you don't have RLS. I'd want to know if it's not working because of the low dose. 2) You want to give the impression that you are trying to work with the neurologist and not just being a difficult patient (even though WE know that you aren't a trying to be difficult - you're symptoms are difficult.) Then you can go back to your neuro and say that you tried. Then put the ball back in her court.

Of course it's totally up to you what you decide.
Susan

Jeff
Posts: 29
Joined: Fri Jun 12, 2009 12:04 pm
Location: Greenfield, Indiana

Post by Jeff »

I'm definately not trying to be a diffcult patient at all.
I'm an hour late on tonight's first dose right now because I dont knwo what I should do.
My heart was beating kind of weird last night and I dont know if it was that medicine or what.
I didnt have time to call the Neuro today (They left that message with my girlfriend)..
I am going to see my doctor Monday because I woke up this morning and I was retaining fluid in my feet and ankles again so this battle is neverending right now..
I'm just worried about the Sinemet making everything worse when this is all already unbearable..


*I went ahead and took it anyways just to see what happens..*

Jeff
Posts: 29
Joined: Fri Jun 12, 2009 12:04 pm
Location: Greenfield, Indiana

Post by Jeff »

Just an update.
After a week of double-dosing on the Sinemet, Ive experienced worse problems then when Im not on it so I just quit taking it..
My ferritin levels came back at 242 which they said was good..
My family Dr. has me back on Lasix for the unexplained fluid retention in my feet, ankles, and lower legs..
Got an appt. with him this morning and I believe they got my sleep study results back so I'll see what happens from there..

ViewsAskew
Moderator
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

So sorry the symptoms worsened, but that is common with Sinemet. The guesses vary, but some people put augmentation as 90% with that drug.

Glad your doctor is still working to find out what's going on.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
Moderator
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Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Post by Polar Bear »

Hope you have a positive appt with your doc today.
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Jeff
Posts: 29
Joined: Fri Jun 12, 2009 12:04 pm
Location: Greenfield, Indiana

Post by Jeff »

Well it was one of those "Hi, How are yas?"..
He said my sleep study looked fine and that he was going to have me start taking my lisinopril twice a day instead of once and to come back in 3 months..
I'll call the Neuro soon regarding my legs but for now Im trying to just put up with it..
The neighbors pool helps.
I stay in that thing for 4 hours walking around and Im able to sleep at night but I cant get in their pool everyday so not every night has been a good night..

Neco
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Joined: Tue Oct 04, 2005 10:18 am
Location: Somewhere in the midwest
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Post by Neco »

That is absolutely horrible.. "Hi how are ya?"

He wants nothing to do with your treatment at all? I hope this neuro is a lot better than that crap..

You have GOT to be strong here.. I forget if you've tried Mirapex and Requip yet.. have you? They may be next if not..

If you have tried them, and now also the Sinemet is bust.. You NEED to print out the Algorithm and take it with you to see this Neuro..

Highlight the section where it states if you have failed TWO OR MORE Dopaminergics, a moderate to strong opiate medication is the next appropriate choice and should not be withheld because of fear of addiction, etc.

You deserve to get relief, and I hope you get it. Please print out the Algorithm and take it with you and if you have to, make the go over it with you... If none of this works, or they try to derail the visit into another area with yet another different drug that has no guarantee of working.. I would tell them "sorry but I've suffered long enough now, and I guess I'll have to find a doctor who will give me the medication I need".

Well.. I dunno how that will go over, but still.. This is a critical junction and you can't flinch or show any sign of weakness in what you are willing to put up with.

If you do any highlighting, make other highlights as you don't want it to appear as if you're just highlighting it so you'll get opiates, they will interpret this as drug seeking or some other BS excuse to justify not prescribing you anything.. so make general highlights as well about other key points you want to discuss within the document too - especially the part where it says Sinemet is NOT recommended.. Seeing as this Neuro is the one that gave it to you I believe?

Jeff
Posts: 29
Joined: Fri Jun 12, 2009 12:04 pm
Location: Greenfield, Indiana

Post by Jeff »

Good point.
I planned on showing the Neuro that algorithm next time I go..
Does anyone of you experience electricity type feelings in the leg muscles..
Something sort of like a twitch but it feels like electrical volts shooting through my calf muscles..
Does that have anything to do with RLS?
I mean I have different pains but I've never heard of the voltlike feeling..

ViewsAskew
Moderator
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

It's hard sometimes to describe things, so forgive me if I get this wrong.

To me, when you say electrical volt, I think of neuropathy. It's strong, it hurts, it's fast, it stings. To me, it's like a bee sting.

Now, my RLS is more like my tongue on a battery. It doesn't hurt, it's just amped up and I HAVE to move it.

I move from the neuropathy to, but it's more of an involuntary contraction from the pain...
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Neco
Posts: 2297
Joined: Tue Oct 04, 2005 10:18 am
Location: Somewhere in the midwest
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Post by Neco »

I don't interpret electrical in the painful stinging way like a battery to the tongue..

I experience these twitches sometimes, where an odd sensation shoots down my spine, its very energetic feeling and has these intensity to it and you can feel it as it moves down the entire length of your spine in a split second.. Kind of like a fast ringing.. like when your reflex is being tested you get that very weird sensation followed by the reflex movement.

I get that and I feel it milliseconds before I actually twitch or as I am beginning to. and I will have a pretty visually observable twitch reaction, with a jerking/jumping reflex.

I interpret it as electrical I guess, because I logically reason that's what it must be if I am feeling this weird impulse shoot through my spine / body. But not at all painful. Its worth noting I don't always get this same feeling, more often that not I just jump/twitch.. Which I believe is a side effect of the Methadone (its very rare most times, but so far no other opiates cause this to happen).

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