Hi!
I just discovered this site. My neurologist believes I have RLS but I am not sure. He also told me I have possible MS. I have read the symptoms and some match with what I am going through, but others do not. I have problems with my legs and arms 24 hours. Nighttime is noticibly worse but it does not get better when I walk around. I find being a cooler room helps me significantly, I can sleep! My doctor has me taking Sinemet, which makes me sick as hell if I do not eat while taking it. I am also taking Celebrex and Soma. They help. I find taking a nice warm bath makes my symptoms worse. Does anyone else have these problems as well?
New to site, have questions!
Hi there 
Welcome to our ever-growing group!
If you'd like to tell us more about yourself we've started a bit of a "biography" page here in this forum. You can find it under Forum Index -> New To RLS ?? -> New Members and Current Members Please Help. If you follow the lead of the other members who have posted there, by giving us some of your "vital statistics" (including what drugs you are currently taking and the dosages, what other drugs you've tried, your symptoms, etc), we will be able to assist you more easily with advice.
There is always someone lurking about here with an ear available for gnawing on at anytime, so feel free to come back in and keep us posted on your journey, or just have a good old vent
Also, so we don't lose you among the myriad of members, keep your postings under this thread. You will find that it will soon become a kind of online "diary" for you and we can easily respond to you under this thread.
OK, now that the "housekeeping" is out of the road, time for some advice!
My first question is, have you had an MRI done?
This was one of the first things I had done when my legs first went completely ballistic on me 13 months ago. Top of the Doc's list of "things to rule out" was MS, Motor Neurone Disease, and "Stiff Persons" Disease (dont laugh at that one! I can't remember the medical name for the disease, but it's a pretty awful one to get!)
Next question is, have you had a complete blood workup done, checking the levels of absolutely everything? Whatever you and your doctor can think of checking, should be checked.
Below I have posted a list of sites relating to RLS. Take some time to peruse them; particularly the links to the medication sites, and the RLS Foundation 2004 Medical Bulletin. Your doctor will definitely benefit from reading the Bulletin to assist in making a correct diagnosis for you.
Now, for MS. I have had my GP and two Neurologists all mention to me "in passing" that the symptoms I present with at the moment could all point to the development of MS. However, I am not dwelling on that as I believe that the power of positive thinking far outweighs the heaviness of MS thoughts.
I have done a quick search on the net and have come up with some links for MS that you and your doctor may find helpful in your diagnosis (BTW, stick to this doc, they sound like they have your best interests at heart...a very rare find at the moment!!)
http://www.msaa.com/
http://www.nationalmssociety.org/about%20ms.asp
http://www.mult-sclerosis.org/
http://www.msfacts.org/
http://www.msif.org/en/
Hope this has been of some help to you.
Remember, take it one step at a time, one day at a time, and most importantly, Stay Positive!!
Take care of you, and keep us posted on your journey!
Welcome to our ever-growing group!
If you'd like to tell us more about yourself we've started a bit of a "biography" page here in this forum. You can find it under Forum Index -> New To RLS ?? -> New Members and Current Members Please Help. If you follow the lead of the other members who have posted there, by giving us some of your "vital statistics" (including what drugs you are currently taking and the dosages, what other drugs you've tried, your symptoms, etc), we will be able to assist you more easily with advice.
There is always someone lurking about here with an ear available for gnawing on at anytime, so feel free to come back in and keep us posted on your journey, or just have a good old vent
Also, so we don't lose you among the myriad of members, keep your postings under this thread. You will find that it will soon become a kind of online "diary" for you and we can easily respond to you under this thread.
OK, now that the "housekeeping" is out of the road, time for some advice!
My first question is, have you had an MRI done?
This was one of the first things I had done when my legs first went completely ballistic on me 13 months ago. Top of the Doc's list of "things to rule out" was MS, Motor Neurone Disease, and "Stiff Persons" Disease (dont laugh at that one! I can't remember the medical name for the disease, but it's a pretty awful one to get!)
Next question is, have you had a complete blood workup done, checking the levels of absolutely everything? Whatever you and your doctor can think of checking, should be checked.
Below I have posted a list of sites relating to RLS. Take some time to peruse them; particularly the links to the medication sites, and the RLS Foundation 2004 Medical Bulletin. Your doctor will definitely benefit from reading the Bulletin to assist in making a correct diagnosis for you.
sardsy75 wrote:Below are some links to some excellent RLS sites, including medications & treatments:
General RLS Information
http://www.wemove.org/rls.html
http://www.jmjudson.com/rls.html
http://www.rlshelp.org
http://www.sleepnet.com/disorder.htm
http://www.rls.org
RLS Treatment Information
http://www.jmjudson.com/medications.html
http://www.rlshelp.org/rlsrx.htm
Fighting RLS with everything else
http://www.rlsrebel.com
You might find it helpful to print out any information you think is important and put it together in a folder. If you're GP/Neurologist doesn't know much about RLS, they should be open to learning about it and helping you out.
I highly recommend the rlsrebel site. It has very practical information for "combat techniques"!
sardsy75 wrote:In addition to the links in my prior post I thought it might be helpful to add a few quick-links to various parts of the RLS Foundation Site:
1. Healthcare Provider Directory
http://beta.restlesslegs.org/provider_directory/
To better serve its members, the RLS Foundation maintains a directory of healthcare providers who specialize in the treatment of RLS. The directory is organized in several formats. If you are trying to locate a new provider in your area, please use the alphabetical listing by state. If you already know the name of the healthcare provider you seek, you may look up the name in the printed directory.
2. Living with Restless Legs Syndrome
http://beta.restlesslegs.org/pdf/LwRLS_English.pdf
This is aimed at both patients & family members. It is a 16-page booklet describing RLS.
3. RLS Foundation Inc. 2004 Medical Bulletin
http://beta.restlesslegs.org/pdf/2004_m ... lletin.pdf
This publication is intended for medical professionals. A copy is mailed to all members of the RLS Foundation and is mailed free of charge upon request to member's health care providers.
4. Special Considerations of the Surgical Team: When a patient has RLS
http://beta.restlesslegs.org/pdf/surgery_and_RLS.pdf
This brief publication is intended for medical professionals.
5. NIH: Detection and Management in Primary Care
http://beta.restlesslegs.org/pdf/NIH_pr ... e_2000.pdf
This publication is intended for primary care medical professionals and is mailed free of charge upon request to member's healthcare providers.
Now, for MS. I have had my GP and two Neurologists all mention to me "in passing" that the symptoms I present with at the moment could all point to the development of MS. However, I am not dwelling on that as I believe that the power of positive thinking far outweighs the heaviness of MS thoughts.
I have done a quick search on the net and have come up with some links for MS that you and your doctor may find helpful in your diagnosis (BTW, stick to this doc, they sound like they have your best interests at heart...a very rare find at the moment!!)
http://www.msaa.com/
http://www.nationalmssociety.org/about%20ms.asp
http://www.mult-sclerosis.org/
http://www.msfacts.org/
http://www.msif.org/en/
Hope this has been of some help to you.
Remember, take it one step at a time, one day at a time, and most importantly, Stay Positive!!
Take care of you, and keep us posted on your journey!
Nadia
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
Welcome!
Dear cmkvlk:
You wrote:
The question is what kind of symptoms do you have? E.g. do you have paresthesia? This is a feeling in the limbs (primarily in the legs that is hard to describe to someone who has never had it. It is not pain but to many it is worse than pain. Many (at least half) also have pain as distinct from paresthesia.
What problems do you have? please describe! Otherewise we cannot tell whether we have similar symptoms or not.
Does it come on with immobility? and clearly for you it does not cease with motion! That does not sound like RLS. The temperature effect you have does not sound typically characteristic to RLS either.
Sinemet is OK but it would be better to try Mirapex as more than 80% of RLS patients respond positively to that medication. If you do not have RLS you may not respond positively.
You state that you respond well to Celebrex. That indicates inflammation somewhere. Not knowing your symptoms I cannot tell the response either.
So at the very least describe your symptoms so we can rely constructively, please.
If you want to rule out Periodic Limb Movement Disorderor other cause of insomnia, a sleep test would be quite useful.
You wrote:
My neurologist believes I have RLS but I am not sure. He also told me I have possible MS. I have read the symptoms and some match with what I am going through, but others do not.[color]
The question is what kind of symptoms do you have? E.g. do you have paresthesia? This is a feeling in the limbs (primarily in the legs that is hard to describe to someone who has never had it. It is not pain but to many it is worse than pain. Many (at least half) also have pain as distinct from paresthesia.
[color=brown] I have problems with my legs and arms 24 hours. Nighttime is noticibly worse but it does not get better when I walk around. I find being a cooler room helps me significantly, I can sleep!
What problems do you have? please describe! Otherewise we cannot tell whether we have similar symptoms or not.
Does it come on with immobility? and clearly for you it does not cease with motion! That does not sound like RLS. The temperature effect you have does not sound typically characteristic to RLS either.My doctor has me taking Sinemet, which makes me sick as hell if I do not eat while taking it. I am also taking Celebrex and Soma. They help.
Sinemet is OK but it would be better to try Mirapex as more than 80% of RLS patients respond positively to that medication. If you do not have RLS you may not respond positively.
You state that you respond well to Celebrex. That indicates inflammation somewhere. Not knowing your symptoms I cannot tell the response either.
So at the very least describe your symptoms so we can rely constructively, please.
If you want to rule out Periodic Limb Movement Disorderor other cause of insomnia, a sleep test would be quite useful.
Jumpy Owl