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Re: Re: arrggg!!!

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Terri You think that was running on? I guess you haven't seen some of my steroid rambles! LOL Hope you're feeling better. grannylunatic@...

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I used to take quinine for the leg bee stings/kicks til they quit making it. I then got worse back pain & the Cymbalta helps it alot. I don't know how much I still kick at night since I live alone but when I get moved & move my kitten in with me I guess she'll scratch me & let me know. It's hour 27 since I got up yesterday so forgive me if I don't make any sense. LOL Urologist's RN doing the test said my bladder is dropped, my brain doesn't let me know early enough & I can't rush to the john & I drink too much coffee. UGGGGGGGG I knew he'd wanna take my coffee away. Was there a good side?????? Well they had electrodes in my "bikini area" so I guess I got a free bikini wax on medicare! LOL Bedtime for this Bonzo soon. grannylunatic@...

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Hi

Kathy,

I have

that terrible leg pain too, nerve damage they say too, in fact I get it down my

whole left side, top of head to toes, anyway point is, I was put on Lyceria,

and it’s great! I know if I am late for a pill, which of course I try

not to. Marla

" Faith

sees the invisible, believes the incredible and receives the impossible "

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of kathy_ceamoore

Sent: Thursday, July 12, 2007 2:05

PM

To: Neurosarcoidosis

Subject: Re:

arrggg!!!

> Hey Guys,

> I just had to post and blow off some steam for the !@@#$$%%%$%%^^ & & !!!

pain in my

legs. Sometimes it is non-stop 24 hours a day and then it will go away. Right

now it is all

the time. It is really pissing me off. I wish I could figure out what sets it

off but no such

luck. This crap really sucks!!

> Here comes another one $#%^ & !!@##$$ & & ))*** - ahhhhh. It

doesn't take the pain

away but at least I am not going to explode. Thanks for listening.

> Terri G.

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> To My New Family

>

> Love Lynne

>

>

> ---------------------------------

> Get the free Yahoo! toolbar and rest assured with the added security of

spyware

protection.

>

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, I still take Quinine. A few months ago my neurologist told me that the FDA was only approving it for malaria, because studies had shown that the risk of complications (heart arrhythmias, hypersensitivity, etc.) was greater than the benefit for leg cramps. I told him that I understood that & accepted the risk. He's known me long enough & trusts that I'm not going to sue him if I have a reaction. The thing is, drugs are given for conditions that are not FDA-approved every day. It's called off-label use. Brethine (terbutaline) is an asthma drug which is commonly used for preterm contractions, even though it is not FDA-approved for that. The reason is that terbutaline has been around forever & is dirt cheap. No drug company is going to spend the huge amount of money needed to get FDA approval for preterm labor. There are many drugs like this. So when you hear that a drug is not approved by the FDA, that isn't necessarily significant. You need to get the background info to make a decision. Of course, many (if not most) doctors, will take the decision out of your hands. Luckily, mine still believes that I have the right to decide for myself. When I'm off the Quinine, I get cramps everywhere. I can't even wipe my butt without my hand, arm & side cramping up. That's why I started it to begin with, about 6 years ago. I may not take it forever, but right now I think it's worth any risk. (Remember, if you read all the info on any drug, you'd think twice about taking it.) That's my story, chickadee!

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Re: arrggg!!!Date: Fri, 13 Jul 2007 09:16:33 -0700 (PDT)

I used to take quinine for the leg bee stings/kicks til they quit making it. I then got worse back pain & the Cymbalta helps it alot. I don't know how much I still kick at night since I live alone but when I get moved & move my kitten in with me I guess she'll scratch me & let me know. It's hour 27 since I got up yesterday so forgive me if I don't make any sense. LOL Urologist's RN doing the test said my bladder is dropped, my brain doesn't let me know early enough & I can't rush to the john & I drink too much coffee. UGGGGGGGG I knew he'd wanna take my coffee away. Was there a good side?????? Well they had electrodes in my "bikini area" so I guess I got a free bikini wax on medicare! LOL Bedtime for this Bonzo soon.

grannylunatic (AT) yahoo (DOT) com

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