Just joined, love this website

[bobkat49]

I am 63 years old, and am a retired college professor. I have had RLS (undiagnosed) for about 20 years, but until recently, it was sporadic, so I didn't seek out medication. But in April (5 months ago), I began having it every night, and was only getting 3-4 hours of sleep a night. Then, in May, I had a very severe case of subacute thyroiditis. Now, I am hypothyroid, treated with Synthroid. My RLS continued with no improvemen, and finally I sought help from my doctor. He ran a blood test, which diagnosed anemia. I have now corrected that by eating more red meat. But I saw no improvement until he started me on the lowest dose of Mirapex (which I actually cut in half) abou 2 weeks ago. It has made a world of difference!! My RLS is totally under control! I still have insomnia some nights, but not due to my legs. I have some questions for you: (1) My doctor says that my symptom (as I describe it) is probably not RLS, but instead, it is called fasciculations (quivering of the mucles, not full contractions). He scared me, because he said that this indicates that I could actually be in an early stage of ALS. So that worry is what is partially causing my current insomnia! Is he correct that my case is not actually a case of RLS?? (Incidentally, I have not yet had the nerve conduction test to determine the cause of my fasciulations, but he is willing to order testing if I want.) (2) What is augmentation? I am so happy to have Mirapex, but some are discussing this as a problem -- exactly what is that? (3) What is WED? (4) What is PLMD? I am so glad to have found this chat room! Thanks for your ideas and answers to my questions.

[ViewsAskew]

Welcome!

To answer a few questions. WED is the new name for RLS - see the label at the top of the screen. The Foundation has petitioned the powers that be for the name change - it's now Willis-Ekbom Disease. A change from syndrome to disease is extremely important. PLMD - periodic limb movement disorder. PLMs - periodic limb movements. Technically, no one with WED/RLS has PLMD - as a disorder, is can only occur in people who have no other sleep disorders. Since we all have WED, we are supposed to just call them PLMs. Augmentation - it's when the medication makes the symptoms worse. To prevent it, get your ferritin checked and make sure it's at least 50 and preferably 100. In a recent study, people with a serum ferritin level of 100 or higher augmented very little, if at all. The lower the ferritin, the more likely they were to augment.

FYI - as you learn to use the board, there is a very good search function. You can search on terms and find out a lot of additional info. It's on the top right of the screen. Many of the members here come and go, so someone might have experienced something you are, but not be here now. You can find their old posts this way and still benefit from their knowledge and what they shared prior.

Fasciculations are not a hallmark of WED. But, it sounds as if you had WED for a long time before. Am I right in guessing that the fasciculations are new? We do have at least one person here who swears that the fasculations are part of her WED. I think someone else had them...and it represented something else. Another term to search on.

Since the Mirapex works, I can't help but think that WED is at least part of the diagnosis (if not all). Are you familiar with the criteria?

[Polar Bear]

Welcome to the site.
Views has just about said it all. i would just also stress that you should have your ferritin checked and ask for the actual reading result, don't just accept a comment of 'normal' because what is normal for most folks is not sufficient for us especially if taking mirapexin.

For your convenience this is the criteria for RLS/WED
There are 4 essential criteria that are all necessary for diagnosis:

1) A need to move the legs, usually accompanied or caused by uncomfortable, unpleasant sensations in the legs. Any kind of sensation may be a manifestation of RLS and a wide variety of descriptions have been used ranging from "painful" or "burning" to "Elvis legs". Sometimes the need to move is present without the uncomfortable sensations and sometimes the arms or other body parts are involved in addition to the legs.
2) The need to move and unpleasant sensations are exclusively present or worsen during periods of rest or inactivity such as lying or sitting
3) The need to move and unpleasant sensations are partially or totally relieved by movement such as walking or stretching at least as long as the activity continues.
4) The need to move and unpleasant sensations are generally worse or exclusively occur in the evening or night.

[badnights]

Hi, and welcome!
I have nothing to add but I am interested in your answers to Views' and pb's questions. especially whether you fit the four criteria. I suspect you will, because the Mirapex had such a dramatic effect on you; that's actually a supporting criterion: if a dopamine agonist (a drug of the same class as Mirapex) brings relief of the symptoms, that's a powerful indicator that the symptoms were of WED (i.e. RLS).

It's great that you have a solution, and that you spontaneously decided to lower the dose. The risk of augmentation is less if the dose is small. btw, augmentation only occurs with the dopamine drugs - levo-carbidopa/Sinemet, pramipexole/Mirapex, and ropinirole/Requip. It has been noted with Tramadol as well, but not very often. There are two other major classes of drugs used to treat WED, anti-convulsants and opioids. The anti-convulsants work well for some people, not so well for others. The opioids work for most people but the other types of drugs are tried first.

If you stay on Mirapex, get your ferritin checked every few months, to be sure it's staying above 50 and preferably above 100. (This is needed despite the normal level for non-WED people being only 20).

[bobkat49]

Thanks, Views and Polar Bear! Your replies were most helpful: the clarification of terms; the advice re. ferratin levels; and how to use the search function (which I did and found very helpful). And you are correct, Views, that my fasciculations have always been my only symptom. I then move my legs because the the urge to do so is so strong, to attempt to relieve them. And Polar Bear, yes -- I do meet the criteria. So again, thanks! I do think that I need to see a neurologist at this point in time, however, just to rule out other problems.

[bobkat49]

Badnights, I just missed your reply (and can't figure out how to reply directly to yours). So I hope you read this. Thanks for your feedback! Yes, I have been prone to anemia all my life -- so it makes sense that low ferretin levels may be playing a major role in this. So I will make a ferritin level test a high priority. (I also wonder if my recent thyroid disease played a part.) I abhore the inhumane way that most of our meat is produced (i.e., factory farms); thus I tend not to eat much meat. But I'm sure that I can find other ways to increase my ferretin levels.

[badnights]

I suspect I was posting at the same time you were!

IF your ferritin is indeed low, an oral iron supplement works for many people. I take two 300 mg pills of ferrous sulfate daily. Some of us with WED consume our iron stores , for unknown reasons. Non-WED people with anemia need only supplement until their iron stores are raised, then they can stop, whereas some of us with WED have to keep taking the supplements because our bodies are constantly using iron up somehow.