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Joined: Jan 2008
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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Quote:



After talking with others, it's starting to sound like it's not RLS after all. Sounds more like peripheral neuropathy, but I won't get in to see a specialist for testing for months at the earliest. Laa la laaaa... around and around we go. lol Great fun.




hi megan,

hope it turns out to be the less serious neuritis instead of neuropathy.
at one point last summer, my doctors suspected neuropathy (and they were going to do the tests for that, fortunately there is a test to rule it in or out).

but for me it turned out to be peripheral neuritis. for me its a combination of inflamed tendons pressing on nerves, spasming muscles pressing on nerves, and when i was told (by the podiatrist) that i had peripheral neuritis, it was fluid retention pressing on the nerves (or so the doctor told me). but for me the fluid retention was drug related, so i stopped the drug, and that got better.

let us know what they find out.

sue

Joined: Sep 2001
Posts: 849
Ninja_AS_Kicker
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Ninja_AS_Kicker
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Careful with extra vitamin E beyond the recommended daily amount it has now been proven to cause damage to the heart ,valves and arteries to it. You can google this.


Bent but not broken.
Yoly
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Megan Offline OP
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Not to worry, the very upper limit is listed at 1000IU, and I was at 800IU, only for a couple of weeks. I dropped it as of today considering the rls symptoms just seem to be getting worse again.
So much for the vitamin e hypothesis!

Joined: Nov 2003
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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Hey Girl,

Just wondering..has anyone mentioned Botox?

If it is in certain areas they can shoot it with Botox to paralyze the nerves IF it is nerves.

I have a friend who is going to the hospital this week for tests she has MS and she has had continual headaches one option instead of neck surgery they are looking at is putting BOTOX int he back of her head where the nerves are that are bothering her.

Whatever they find I told her to be very careful, it would take alot for me to let them do surgery or Botox on my neck..Im hoping she will be ok.

Anyway just a thought it has done alot of good for alot of people.

Hugs,

Lisa


Speak kindly, Live simply, Care deeply, Love generously, and BLAH, HA, HA, LOUDLY! every chance you get.

Joined: Apr 2002
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Megan Offline OP
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I thought of that the other day and searched it. It's in clinical trials right now, and would love to try it once it's out. I just hope they don't have to go too deep to do it, wimpy me - I swear it feels like it's in my bones. Got tired of trying to suck it up, so I'm going to up my morphine to 10mg twice a day. It's still not a very high dose, but it sure helps, and helps the rest of my bod too. Thinking an extended release morphine might be better for me, but not sure if my gp will be on board with that - we shall see.
Sure hope your friend gets help from the botox.

Joined: Apr 2002
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Megan Offline OP
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Hi Sue, I'm going to try and see a podiatrist about my feet issues, and maybe they'll even be able to give some insight into my leg problems as well. Podiatrists are one of very few specialties not covered by the public health care plan here, so it shouldn't be too hard to get in to see one. No waitlists. I'm picking up a copy of my feet MRIs to take with me, hoping that will help. I still can't believe my MRIs were clear, minus a recent ankle sprain which I must have ignored somehow - that gives you an idea of how much my feet hurt if a moderate ankle sprain went unnoticed. lol It's got to be some sort of nerve thing then... I would think... who knows, really. I'm just glad yours was helped by dropping your med!

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First_Degree_AS_Kicker
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First_Degree_AS_Kicker
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Meggie...

Hear you have really sexy legs, so please don't cut them off...say what? My cocktail...a gatorade everyday (seriously) daily mag. dose, and of course a radon treatment every six months... still feeling great. Wishing the best for you as always...


If you ever drop your keys into a pool of lava, forget about them, cuz man, they're gone.

- Jack Handey.

.......................................

http://h20girladventures.blogspot.com

Joined: Apr 2002
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Megan Offline OP
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sexy legs LOL.
It's been 12 months exactly since I was at the mine. Coincidence?

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First_Degree_AS_Kicker
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First_Degree_AS_Kicker
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word. And dont you know it.


If you ever drop your keys into a pool of lava, forget about them, cuz man, they're gone.

- Jack Handey.

.......................................

http://h20girladventures.blogspot.com

Joined: Nov 2001
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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Hey there, did a little surfing on this today and found an interesting pamphlet on RLS in children. I've linked it here:

RLS.org Pamphlet

It's worth reading whether or not you have kids.

Warm hugs,


Kat

A life lived in fear is a life half lived.
"Strictly Ballroom"

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