OK! I've had MS for 35 years was on klonopin for 18 years at 2.5 mgs for anxiety and in 2000 decided to get off. Last April I was at 1.25 and as soon as I went below 1 mg my legs started to bother me. So here are the usual symptoms and please tell me which are to RLS?
During the day if I sit for awhile and I get up my legs are very stiff.
At night I get this feeling like a painfull current travelling down my legs.
At rest on occasion my legs start skaking.(tremor)
I 've done weight lifiting for years and I notice the my calve muscles have lost tonus.
When I stretch my legs as far as I can my muscles go into spasms and it is very painful.
I tried mirapex and dont like it. I feel like in a coma and emotional and sweat a lot.
I'M thinking of raising my klonopin from my actual dose of 0.5 til I feel better.
Waiting for your reply...
thanks
Need help!! what is MS and what is RLS?
Need help!! what is MS and what is RLS?
Had multiple sclerosis for 35 years +
Hi Vinton,
My sisiter in law has MS and is always asking the same thing, it is MS or something new.
I am no doc and no formal medical training so please accept what I say with the love intended, and then check it out with your doc....
I know that she tried (SIL) Mirapex and it made her worse or did nothing about her legs, so my theroy was that RLS migh tbe present but as a side effect from the MS. The sopamine should have helped her.
Ok, here we go: You said>>>>>>>>>>>
During the day if I sit for awhile and I get up my legs are very stiff.
I stiffen up and my muscles pull, so I understand the feeling. But my isiter in law finds the same thing. Weather changes seem to effect her that way. Hmmmm not much help there, was I?
At night I get this feeling like a painfull current travelling down my legs.
Again, I could say yes to this one as well, but it happens to be a normal part of my RLS, and it's normally when I'm under a major attack.
At rest on occasion my legs start skaking.(tremor)
We talked about this somewhere on this board, that if we don't move, our brain will for us. Again it could be the MS, so much of MS and fibro mix in well to the RLS symptoms, it's hard to seperate them.
I 've done weight lifiting for years and I notice the my calve muscles have lost tonus.
I would think this is MS, not RLS. But you need to know that moderate to mild excercise is best for many of us, after we reach a certain point. I do the most recommended I walk. I know that weight lifting can be somewhat addictive. My hubby was bummed about not being able to after his open heart surgery. Sorry, I have no idea what the MS docs say about this, ask for sure.
When I stretch my legs as far as I can my muscles go into spasms and it is very painful.
Yeah I should have the body and muscle structure of an 18 yr old, but my muscle just say tighten up, it start without fail around nonn everyday for me and builds. Try lightening up on that one and when it happens if possible get in a hot bath to sooth them.
I tried mirapex and dont like it. I feel like in a coma and emotional and sweat a lot.
If you saw no noticable difference with Mirapex, it's possible this is not RLS. Most people respond well, even if it is short lived to dopamine medications. But again, RLS can be a secondary problem of MS, in my opinion. I just won;t waste my time on things that don't help. Tha is not to say that one say it might help you, so keep that option open.
I'M thinking of raising my klonopin from my actual dose of 0.5 til I feel better.
I'm asking why stop if it helps? It's not so easy to find something that works and talk to the doctor, he or she might be able to give you a better answer about the raise in dose and what other things you might try.
It's a tough row we hoe, but Vinton we are going to keep working til we get it right.
Hoep this helps and If I have gotten anything wrong, someone with post with me. We learn best together.
Hugs dear,
Lynne
My sisiter in law has MS and is always asking the same thing, it is MS or something new.
I am no doc and no formal medical training so please accept what I say with the love intended, and then check it out with your doc....
I know that she tried (SIL) Mirapex and it made her worse or did nothing about her legs, so my theroy was that RLS migh tbe present but as a side effect from the MS. The sopamine should have helped her.
Ok, here we go: You said>>>>>>>>>>>
During the day if I sit for awhile and I get up my legs are very stiff.
I stiffen up and my muscles pull, so I understand the feeling. But my isiter in law finds the same thing. Weather changes seem to effect her that way. Hmmmm not much help there, was I?
At night I get this feeling like a painfull current travelling down my legs.
Again, I could say yes to this one as well, but it happens to be a normal part of my RLS, and it's normally when I'm under a major attack.
At rest on occasion my legs start skaking.(tremor)
We talked about this somewhere on this board, that if we don't move, our brain will for us. Again it could be the MS, so much of MS and fibro mix in well to the RLS symptoms, it's hard to seperate them.
I 've done weight lifiting for years and I notice the my calve muscles have lost tonus.
I would think this is MS, not RLS. But you need to know that moderate to mild excercise is best for many of us, after we reach a certain point. I do the most recommended I walk. I know that weight lifting can be somewhat addictive. My hubby was bummed about not being able to after his open heart surgery. Sorry, I have no idea what the MS docs say about this, ask for sure.
When I stretch my legs as far as I can my muscles go into spasms and it is very painful.
Yeah I should have the body and muscle structure of an 18 yr old, but my muscle just say tighten up, it start without fail around nonn everyday for me and builds. Try lightening up on that one and when it happens if possible get in a hot bath to sooth them.
I tried mirapex and dont like it. I feel like in a coma and emotional and sweat a lot.
If you saw no noticable difference with Mirapex, it's possible this is not RLS. Most people respond well, even if it is short lived to dopamine medications. But again, RLS can be a secondary problem of MS, in my opinion. I just won;t waste my time on things that don't help. Tha is not to say that one say it might help you, so keep that option open.
I'M thinking of raising my klonopin from my actual dose of 0.5 til I feel better.
I'm asking why stop if it helps? It's not so easy to find something that works and talk to the doctor, he or she might be able to give you a better answer about the raise in dose and what other things you might try.
It's a tough row we hoe, but Vinton we are going to keep working til we get it right.
Hoep this helps and If I have gotten anything wrong, someone with post with me. We learn best together.
Hugs dear,
Lynne
I tend to agree with Lynne. The biggest clue to me is the Mirapex. I think if you had RLS, the symptoms would either get better or worse with the Mirapex. The muscle tone issue definitely sounds like MS. But, just so that you get clear direction from the experts, here is a quote from the "What is RLS?" section of this site and is pretty standard with regard to RLS diagnosis:
"In order for you to be officially diagnosed with RLS, you must meet the criteria described below:
* You have a strong urge to move your legs which you may not be able to resist. The need to move is often accompanied by uncomfortable sensations. Some words used to describe these sensations include: "creeping", "itching", "pulling", "creepy-crawly", "tugging" or "gnawing".
*Your RLS Symptoms start or become worse when you are resting. The longer you are resting, the greater the chance the symptoms will occur and the more severe they are likely to be.
*Your RLS symptoms get better when you move your legs. The relief can be complete or only partial but generally starts very soon after starting an activity. Relief persists as long as the motor activity continues.
*Your RLS symptoms are worse in the evening especially when you are lying down. Activities that bother you at night do not bother you during the day."
Hope this is helpful. Let us know how things are going. Oh, and welcome to the board.
"In order for you to be officially diagnosed with RLS, you must meet the criteria described below:
* You have a strong urge to move your legs which you may not be able to resist. The need to move is often accompanied by uncomfortable sensations. Some words used to describe these sensations include: "creeping", "itching", "pulling", "creepy-crawly", "tugging" or "gnawing".
*Your RLS Symptoms start or become worse when you are resting. The longer you are resting, the greater the chance the symptoms will occur and the more severe they are likely to be.
*Your RLS symptoms get better when you move your legs. The relief can be complete or only partial but generally starts very soon after starting an activity. Relief persists as long as the motor activity continues.
*Your RLS symptoms are worse in the evening especially when you are lying down. Activities that bother you at night do not bother you during the day."
Hope this is helpful. Let us know how things are going. Oh, and welcome to the board.
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer
Ms or RLS
HI,
Thanks sooo much for your support. Its just that I want to take the right med for the right problem. I ate to jump from med to med.
One more question:
When I stretch my foot forward my calve muscles go into a spasm.
Do you have this problem?
would mirapex cause any mood problems at 0.5. My brother in law is at 4.5 for parkinson.
Actually I have to admit that I'm scared of medication .
Thanks sooo much for your support. Its just that I want to take the right med for the right problem. I ate to jump from med to med.
One more question:
When I stretch my foot forward my calve muscles go into a spasm.
Do you have this problem?
would mirapex cause any mood problems at 0.5. My brother in law is at 4.5 for parkinson.
Actually I have to admit that I'm scared of medication .
Had multiple sclerosis for 35 years +