Diagnosed today

[Cathy]

I stumbled onto this site a few days ago....searching for what the heck was wrong with me......why I couldn't sleep and why my legs and arms felt so weird! Went to the doc today and he thought the same as I did.......my symptoms sound alot like RLS. I am just amazed reading the postings at how many suffer and how varied the symptoms and treatments are. The doctor I saw today wasn't my own and he quickly prescribed Levocarb for me to try for 2 weeks before my own doctor returns. Am I right in being hesitant to jump into this drug treatment (although it is only for 2 weeks) when he hasn't ordered any iron test etc?Will be looking to you all for support and options....nice to know I'm not going crazy alone

[Rubyslipper]

I applaud your hesitancy in jumping in with meds. I do have to ask; is your doctor informed about RLS? (either this one or your regular doctor) It is a good idea to have several tests run and it sounds like you are checking out the different threads to see what others have tried. Also check out the actual RLS site for information. The more information you can go armed with, the better. But for the majority of us, tests do not tell you if you have RLS, it may (at best) tell you about any underlying problems that can either cause RLS or make it worse. From my experiences, I would wait to either discuss it with your regular doctor and hope he or she is willing to work out the problem or try to find a doctor who is already working with others that suffer from RLS. How severe are your symptoms? If they are mild, try some of the non-pharm. remedies for relief. One thing you will find, you will become your own guinea pig as to what works and what doesn't. Pay attention to what others have discovered. There are so many self-educated RLSers on this site. Listen to them, try different things and hang in there. We're here to help each other and for myself, I have received more support and help from this site than from my doctor. Several of us have had to almost force our doctors to listen to us. I am a firm believer in going to a different doctor if the current one is not helping. But please keep us posted on your journey because we are all walking the same road.

[jumpyowl]

Welcome Cathy:

The drug prescribed for you is a dopamine agonist. Here is some info on it:

This medication has 2 components; LevoDopa (L-Dopa), the active Parkinson's medication (this is a precursor drug and turns into dopamine in the brain), and Carbidopa, an inhibitor of the enzyme (decarboxylase) which inactivates L-Dopa. The short acting form of this medication comes in 3 strengths: 25-100, 10-100, and 25-250. The first number indicates the amount of Carbidopa and the second number is the amount of L-Dopa in the pill. This combination is also called Sinemet where the ratio is usually 25-100.

The medication generally works better for nighttime RLS than on daytime RLS symptoms.

Sinemet also comes in a sustained release long acting formulation called Sinemet CR, in both 25-100 and 50-200 strengths. This slow release tablet comes to peak action in two hours, so it is often combined with a short acting Sinemet to get relief within 30 minutes.

Two main problems for patients with RLS using Sinemet are rebound and augmentation. Rebound occurs as the drug's action is wearing off with the symptoms coming back even worse than they were before treatment. Augmentation is an increase in RLS problems in general, not just as the drug's effects are wearing off and is the most common reason for discontinuing Sinemet.

Sinemet CR generally prevents the rebound problem and may help avoid augmentation.

NOTE: Due to the problems of rebound and augmentation which may occur in 50-80% of patients, Sinemet is likely better for mild RLS, in which the dose of medication can be kept low enough to avoid these side effects.

Now there are other better Parkinson's disease drugs available, Sinemet should not be used for RLS (except by RLS specialists who are very well versed with the problems with this drug).

I think it is a good idea to try a dopamine agonist in the beginning because it has a diagnostic value also. If it helps then you most likely have RLS.

The doctor chose Levodopa (is it combined with carbidopa?) because it has been around the longest to treat Parkinson's. There are better drugs today and the best is probably Mirapex starting at 0.125 mg level once in the evening.

It is up to you whether you will try Levodopa or wait until your own doctor returns. In either case, you should read up on the disease so you can intelligently discuss it with your doctor. Read the thread entitled "Algorithm for RLS", or something similar.

[jan3213]

Welcome Cathy! This is Jan.

I'm so sorry you have RLS, but am so glad you found us! We're a good group of caring people who are willing to listen, and as you've already seen, give good advice, just as Ruby and Jumpy already have (two of our best!). While I'm typing this, I can't see what Ruby wrote, but when I first started (and she may have already told you this), I read every post under every subject. You'll be surprised what you'll learn. While you're reading and learing, my RLS bio is on page 1/New to RLS/New Members and Current Members Please Help. We're asking that any new members please fill one out, too. You can see it's pretty informal. At the very beginning of that thread, it lists what we want, but you can look at almost anybody's and see what they have. If you don't have all the information right now, don't worry about it. It can always be updated later, and you can change the page number when it's YOUR turn to welcome a newcomer. Good luck on your journey! Remember, if you want to talk or vent or ask questions, there's ALWAYS someone who will listen!! Take care!

Jan

[Cathy]

Thank you all so much...... had tears on my eyes reading your replies.... I don't feel alone. I have learned so much from the site and your posts. Thank you again.

[Rubyslipper]

Hang in there!! We're here for each other and that really means alot. Keep us posted on how you get along.