Hello from IN!

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ViewsAskew
Moderator
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Location: Los Angeles

Post by ViewsAskew »

Jeff wrote:So with ahving the symptoms 24/7, Sinemet isnt recommended?
I told her it was a 24/7 thing and I forgot the algorithm(my thinking has been off lately)..
I dont really notice when the symptoms start so how will I be able to tell if augmentation kicks in?
Bare with me, this is all totally new to me.. :?


Correct - You should NOT take Sinemet more than 4 days a week, at a low dose at that.

Not your fault for forgetting the algorithm. Shame on her for thinking to use Sinemet on daily RLS!

Augmentation is really lousy, as Zach said. The RLS will get harder, stronger, longer. It's really, really, really miserable.

But, if you have failed a DA before, it's very possible that this won't help anyway!

The good news is that it works really fast - in like 20 minutes. So, you should know quickly if it helps or not.
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.

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

Post by Jeff »

I was sure to mention my unsuccessful short run with Requip..
In her reaction, she seemed quite surprised that it didnt help me at all.
I told her that I started experiencing uncontrollable twitching after several days on the med..
I trust you guys because yall've been through this longer than I have and if the Sinemet isnt gonna work it isnt gonna work..
I'll give it a day or 2 and if it seems not to be helping, I'll call them and ask to speak with the Dr. about it..

ViewsAskew
Moderator
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Location: Los Angeles

Post by ViewsAskew »

Jeff, the first thing I'd do is to write to Dr Buchfurer - somno@verizon.net.

You can read the patient letters (86 pages of them) that he's responded to on the So California Support Group site, rlshelp.org.

He will usually respond quickly. Tell him how much Sinemet she prescribed and ask him how quickly you should get results, if you are to get any. Also ask him what he thinks you might have - providing all your background.
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.

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

Post by Jeff »

I'm on it.
Thank you!

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

Post by Jeff »

Well Ive taken both doses of the Sinemet tonight and I dont really feel any different except being really tired..
And the dosage was 25-100..
Wonder if I should just stop it suddenly and call the doctor or give it another day?

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

Post by Jeff »

Well, now Im confused..
I got a response from Dr. B this morning and he said that if the Sinemet wasnt working (which should start immediately he said) I either didnt have RLS or the dosage needed to be increased which he said would lead to more trouble with long term use..
I definately meet all the criteria for RLS and have officially been diagnosed it having had everything else ruled out..
Do I start a new medicine? :(

Sojourner
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Location: USA

Post by Sojourner »

IDK, I think this has been discussed before.... That is, there are some who believe/think/philosophize/theorize/argue/promote/discuss--whatever--that if you don't respond to a trial of sinemet than you, in fact, don't have rls. Kinda, a de facto diagnosis. Not sure how widespread the notion is or has become. May be something Dr. B. has held to or not. Not sure I agree with it even though, in my case, I did respond to the Sinemet quite well. Wonder how many others here may not have responded to Sinemet but did respond to other meds.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

SquirmingSusan
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Post by SquirmingSusan »

It seems that if you don't respond at all to dopamine agonists, like Sinemet or Mirapex, then it is quite likely that you have something else going on besides RLS. There may be a tiny, tiny minority of people who don't respond to those, but that would seem odd to me because those drugs target the exact mechanism in the brain/spinal cord that is "broken" in those with RLS.

It's very likely that your symptoms are caused by something else, and since RLS is a benign (although incredibly horrible and maddening) condition, it won't kill you. There are other conditions that should be looked for that are not benign.

Does that make sense?
Susan

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

Post by Jeff »

Makes perfect since but arent there other things that cause RLS besides low dopamine levels in the brain?
I think they've ruled out pretty much everything else..
I'm almost to the point of complete anger and wanting to give up..
I'm tired of being weak during the day and restless at night and I just want some relief, not no back and forth mumbo jumbo..
I've decided to take the Sinemet tonight and call the Neuro in the morning.
Next time I go, I will bring that Mayo Algorithm with me but if she refuses to read it, I cant just say "well to hades to you" because Im on a insurance plan for low income families and I can only see Drs. who accept it..
I'd love to go see Dr. Hague in Indianapolis but I cant afford that.. :evil:

SquirmingSusan
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Post by SquirmingSusan »

Is there any medication that you've taken that has worked? I know that your doctor took you off Neurontin because of swelling of the hands and feet (a very common side effect of Neurontin). Did it help with your pain? If it helped at all, you could try a different anticonvulsant. Usually after Neurontin, the docs will have you try Lyrica, which works similarly and may or may not have similar side effects. But if those have intolerable side effects, there are many other anticonvulsants that have different side effects, and may be more tolerable.

Did you ever try the tramadol? That is a non-narcotic drug that works like an opioid. It's supposed to be about as strong as Vicodin in terms of pain relief. And doctors aren't so skittish about prescribing it because it's not a controlled substance.

We had a gal who used to participate in this forum who went round and round trying different medications for her RLS - and she met all the diagnostic criteria for RLS - and for years couldn't get any relief. Finally she was diagnosed with a condition called small fiber neuropathy.

At some point you may just want to focus on getting symptom relief until they figure out what's causing your pain.

Do you have a pain clinic you can go to?
Susan

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

Post by Jeff »

Im kind of limited as to where I can go.
Im on HIP which is Healthy Indiana Plan, a low-cost insurance for people with low income and I can only see doctors who are accepting it and not many are..
Neurontin did nothing for my symptoms at all.
Quite honestly, I dont know why I kept taking it..
I've thought about a sleeping pill to help me catch up with my sleep and Extended Release Tramadol for pain.
I know when these symptoms first started last year, the ER put me on Flexeril and Tramadol but they didnt help very much, probably because of the low dosage..
Im not sure my Neuro knows much about RLS but I dont know..
It's just so aggravating when I cant get any relief from this.
I guess all I can do is keep educating myself and reading some of you guys' experiences..

ViewsAskew
Moderator
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Location: Los Angeles

Post by ViewsAskew »

Jeff wrote:Makes perfect since but arent there other things that cause RLS besides low dopamine levels in the brain?


Well, they're really not completely sure WHAT causes RLS, but in the brains that they have autopsied, dopamine is always involved.

There also seems to be very few, if any, people who do not respond to dopaminergic drugs. People may get sick on them or can't take them for various reasons, but they seem to always help.

Per being diagnosed....sometimes docs make mistakes and you get an incorrect diagnosis. Not saying this is definitively what happened, but that it could have.

So....that puts you in a tough place. I'm not definitively saying that it's not RLS, but it's something that should be explored because if it's not RLS, something else is going on and it could be potentially a problem if not identified and treated.

Jeff, I'm really thinking that there are multiple things going on and that the RLS is the wrong focus. You mentioned creepy crawlies in your first post along with pain. When you take the Sinemet, does the creepy crawly feeling go away?

So far, if I'm following correctly, you've tried Flexeril, low dose of Tramadol extended release, Requip, Sinemet, and Neurontin and none have helped. Now, it's possible that the doses simply weren't high enough. If it were me, I'd want to make sure I tried one of the dopamine drugs at a high enough dose to determine yes or no - does it help.

I'd also want to closely think about every symptom. Write them down. And see which of the drugs seems to help what symptom - none, some, different ones for different drugs? That would help the doctor quite a bit, I imagine.

I am so sorry you are going through this. It's very frustrating, especially when others don't seem to understand why this is bothering you so much and you haven't a lot of choices in terms of doctors. If it makes you feel any better, I have a huge city full of doctors and can't find one that knows what he or she is doing :cry:
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.

mackjergens
Posts: 406
Joined: Sat Jul 21, 2007 5:10 am

Post by mackjergens »

jeff,
I know how hard this is, but most drs know very little about rls, and it seems since RLS has become a known in the medical field that alot of Drs will say its rls when someone comes in complaining with legs.

you might wish to go to www.wemove.org and on the left side of web page you will see a long list of other movement disorders, you should read thru all those and just see if maybe you find something that matches your symptoms better than rls. it sure worth a try.

For years drs didnt even have the slightest ideal what was going on when you went in and said you had creepy crawlies in legs and had to walk all night. Now they seem to know just enough to be dangerous about rls.*L*
Back then they just thought you were nuts and shook their heads and said there is nothing I can do to help you. Now they know that RLS is a real medical problem, but you can still tell that most think its still all in your head, and actually it is. our brains do not work like others.

As for Dr B, I would trust his opinion, because he has done so much research on rls. and certainly knows alot more than the avg Dr.

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

Post by Jeff »

That's a good suggestion mack.
I'll check that out..
At this point, I'll take any suggestion and any peice of advice.
I'm not gonna just pass it up because like I said, I want my sleep and my energy back..
Thanks guys for being so helpful and understanding.
Wish I had a few select family members that were...

*I checked out that website and looked through all the disorders and their symptoms and none of them seem to fit my issues. Only RLS.*

Wayne
Posts: 179
Joined: Tue Feb 17, 2009 1:50 am
Location: Virginia (USA)

Post by Wayne »

Hey Jeff

My problem was similar to yours. For 3 years my GP and I thought I had RLS, but I didn't respond to the RLS specific meds (Requip and Mirapex). I was eventually (recently) referred to a Neuro who ordered a series of tests and was diagnosed as having neuropathy. He prescirbed Neurontin to which I have responded very well so far.

It would be worth it to get a thorough examination so you can get the correct diagnosis and treatment. I have a thread here called Neurologist ( in which I've posted the chronology of the last few months.

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