hey folks

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
Post Reply
ugh
Posts: 2
Joined: Tue Jul 20, 2004 2:08 am

hey folks

Post by ugh »

So I have been reading about this a little. I have had RLS for many years now and never knew what it was until about a year ago. I tried reading nutrition books but that never really helped me much. My momn always told me that it was a potassium deficiency. That I found out didn't work either. I have been to 2 doctors now at kaiser perm. and they don't really know what to do about it. I have an appointment at the neurology center and I am hoping that they can do something. It just seems that the doctors I am seeing are very apathetic about it.

Does anyone have anything I can do in the meantime to try and relieve the symptoms? Any medicines I can try to get? The doc gave me Relafen to try but I am not sure about it. It is for arthritis. But he knows nothing about RLS and I don't have arthritis. Exercising my legs helps a little but it comes right back. I am just starting to feel like I am not getting anywhere.

-ugh

jumpyowl
Posts: 774
Joined: Sat Mar 27, 2004 2:59 pm
Location: Yantis, TX
Contact:

Welcome, ugh:

Post by jumpyowl »

Well, your initial experiences taught you a few things:

1. You should not waste your time and money to go to doctors picked at random. It sounds like you have seen two doctors specializing in rheumathology :shock: . Why? when you seem to know you do not have rheumatism? So you received an NSAID medication which has some analgesic and antiinflammatory effects. Clearly not helpful!

2. You are quite a bit on your own, so DO some reading!!! Right here on this Discussion Board and other RLS oriented sources.

When you get to the point where you can ask specific questions you are more likely to to get helpful answers. 8)

What is your age and gender?

There are some deficiencies that can cause RLS symptoms. Ferritin is the most common. Also magnesium and potassium. You need a blood test to rule those out. Do not supplement blindly! That can be risky!

All medications found to be helpful in treating the symptoms of RLS/PLMD need prescription.

However, there are nonpharmaceutical approaches to the problem, go to that forum and other web sites.

RLS has the potential to mess up the quality of your life. So get going! :)
Jumpy Owl

ugh
Posts: 2
Joined: Tue Jul 20, 2004 2:08 am

Post by ugh »

Both doctors I have seen are General Practitioners. Not specializing in arthritis conditions although that is what he gave me :( The second one referred me to the Neurology Dept.

I have no choice but to see these doctors because of my insurance. I cannot just start going to different doctors and paying for it.

I have been doing some reading and I have ordered that book "Sleep Thief". I understand about the supplements that can be done but those haven't really helped me. I am convinced that I have RLS because all the symptoms I have match up but I haven't been to a doctor who will "officially" diagnose it.

I am getting blood work done as well but in the past it has always been good. No problems.

Sorry to trouble you. I suppose I could have been more forthcoming with what I have done but I figured that at the point of posting here it was expected that someone had done enough research and came up empty handed.

Anyways I am male and 31. Guess you can just delete this and forget about it.

thanks though......

jumpyowl
Posts: 774
Joined: Sat Mar 27, 2004 2:59 pm
Location: Yantis, TX
Contact:

Dear Ugh!

Post by jumpyowl »

I thought what I was writing to you was a bit helpful. I was apparently wrong. :oops: I re-read it and depending on your emotional state my post could have had a depressing effect. Sorry! :(

Sorry to trouble you. I suppose I could have been more forthcoming with what I have done but I figured that at the point of posting here it was expected that someone had done enough research and came up empty handed.

Anyways I am male and 31. Guess you can just delete this and forget about it.

thanks though......


What do you mean delete it? We have not started as yet! I want to help you if I can, but I need to know where you are 'in the game'. Without some background info, it is like shooting in the dark, i.e. impossible to score. :(

I only recognized (self-diagnosed) my RLS in March of this year. I have never heard of the affliction before. This is when I started the (by now long) thread "Self-diagnosed" in the Forum of "New to RLS".

Still I think I came a long way. With the help of others, and doing some research, I learned a lot not only about the disorder but also doctors' attitude toward it.

I would like to ask you some questions, but if you do not want to answer it publicly, you can always write me an e-mail (click on the e-mail button). Do not write to "private mail" because my private mail box is almost full.

First of all some info. Even though there is no FDA approved medication for RLS and there is only subjective diagnosis, surprisingly a lot of experimentation has been going on by doctors and patients encouraged by some drug companies. (FDA does move slowly and they are quite busy).

What I would like to know whether you have been prescribed any medication recognized by physicians familiar with RLS as effective in controlling the symptoms? . There are drugs in four major groups recognized as primary treatments for RLS.

1/ dopamine agonists (I am taking Mirapex)

2/ anticonvulsives (I tried Neurontine and Topamax)

3/ sedatives (I tried Klonopin and Lorazepam)

4/ opioids (I am taking hydrocodone (10mg/325 mg) and hope to try Ultram soon.)

Have you ever had a polysomnography done on you (sleep study)? You can see the results of my sleep study in my thread referenced above on pages 2-3.] RLS is often associated with PLMD (periodic limb movement disorder) and that can be objectively determined. I was diagnosed with a severe PLM in May (see my thread, pages 2-3 for results).

Last question: have you been prescribed antidepressants, if so, which one(s)? They are very popular nowadays with doctors and can be very helpful with correct diagnosis (which is sometimes missing). The problem is that they exacerbate RLS symptoms (especially of certain types.

I hope to hear from you one way or another. :)
Jumpy Owl

Post Reply