Re: Re: Restless Leg Syndrome in full force!

[Guest guest]

Or just be the mito. It is hard to tell the difference between RLS and

myoclonus, if there even is a difference.

laurie

>

> Reply-To:

> Date: Sun, 16 Jan 2005 17:43:22 -0000

> To:

> Subject: Re: Restless Leg Syndrome in full force!

>

>

> You're not on Paxil, are you? My brother (no mito dx) got RLS badly

> when he went on it, and had a rough time deciding whether he would

> stay on it or not. It also seemed that keeping his legs warm helped

> a lot, like wearing long underwear even when in the house under

> regular pants.

>

> RLS may be a side effect of other meds too...

>

> Take care,

> RH

>

>

>

>>

>> Okay, I know we have discussed this many times before, but I am

>> really suffering with RLS the last 3-4 days. I went to the movies

>> last night and the entire time my calves kept twiching and

> cramping.

>> I came home and rested but the I got worse during the night! I was

>> up so many times trying to reposition myself so that I would not be

>> putting pressure on my legs. Unfortunately this did not good and I

> am

>> feeling the effects of this this morning. I have had bouts of

>> myopathy that have been so severe I have spent 6 months in a

>> wheelchair. I often need to use a cane or walker when the myopathy

>> gets severe. I have taken Quinine in the past but my old Neuro

> took

>> me off of it and put me on Folic Acid Supplements over the counter.

>> When I get in one of these bouts I am sure to trigger a myopathy

> that

>> will make my legs like " jelly " . My legs are already beginning to

>> buckle. I can tell that I am going to end up wobbeling around my

>> house all day. I am stubborn and I will only use the cane or walker

>> when I absolutely need to..........maybe not the brightest but it

>> emotionally makes me feel like I have some control. , LOL.

>> I was wondering if any of you who also suffer with RLS can give me

>> some advise about what I can do to get over this episode. I am

> going

>> to the doc (PCP) tomorrow for a F/U for my neck and PT I have been

>> in for several months. I plan to ask him if going back on the

> Quinine

>> will be helpful. Dr Cohen started me on it several years ago and

>> although the symptoms didn't disappear it did seem to be less

>> bothersome. My old Neuro decided that the Quinine wasn't good for

> me

>> and felt the Folic Acid was a better choice for the long term.

>>

>> Thanks for any help you can send my way!

>>

>> Ps Welcome to our lastest member!

>

>

>

>

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[Guest guest]

That would be nice, however, since there are so many complexes, and the answer

as far as diet varies from person to person depending on the defect, and where

the problems lie in the body from the defect etc. the person would have to be

up on all of the defects in our metabolic system, and since many of them can't

even be completely identified yet, that isnt possible as of yet sigh. Maybe

someday.....

ohgminion rakshasis@...> wrote:

> I also feel that each diet needs to be individulaized for each

> person, especially those of us with Metabolic Diseases.

I wish we could find some " metabolic nutrionists " who could answer

some questions on these subjects, regular dieticians/nutritionists

seem to be in the dark, and the neurologists don't seem to know

either.

Take care,

RH