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Old 06-03-2007, 05:10 AM   #1
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goldenwings HB User
Wink I'm back - again !!

Hello everyone,

Sorry not to have been here regularly for while. Things happen as you all know when we least expect it.

My latest news - I have dystonia which I posted about here. I am awaiting my appointment with my neurologist for the course of treatment to be discussed. I have a call in to Dr. Wallace but I don't for one minute contemplate having that put into my body though. It is a poison. With having multi organ involvement with my SLE I want to make sure of everything I do. I thought it would be worth getting the information from him though so I could share with you all. I'll let you know when I get to speak to him.

Had my chest/rib injections done on Friday for my costo treatment. Still sore and tender but when they start to work it is all worth it.

I do hope you are all having a good weekend. Take care

goldenwings
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I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

Last edited by goldenwings; 06-03-2007 at 05:12 AM.

 
Old 06-03-2007, 09:06 AM   #2
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Location: southeast Indiana U.S.A.
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realisticchic HB User
Re: I'm back - again !!

Good to hear from you Golden Wings! I hope the shots for the costochondritis kick in and make you feel better soon. I have always been too afraid to take the injections for the costo....Are they excruciatingly painful as I have imagined them to be? How long does the pain from the injection last? How much relief do you get when the shots start working, and does it last long? Sorry for so many questions I will await you post about what Dr. Wallace says. I agree that it is a good thing to ask him first!

 
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Old 06-03-2007, 09:59 AM   #3
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BarbaraH HB UserBarbaraH HB UserBarbaraH HB UserBarbaraH HB User
Re: I'm back - again !!

Welcome back! So glad your problem has a name and will hopefully also have a less worrisome treatment soon. Cheers and brownie points for your thought to ask Dr. Wallace before beginning a scary treatment in view of your lupus. Wise woman!!

I hear you on you "things happen when you least expect it" comment. I may have panniculitis (internal medicine doctor looking into it), got a tick bite that became the bulls-eye rash so am being treated for Lyme in hopes to avoid it, and this morning jammed a finger! All in the last 2 weeks. Who do I say UNCLE to??

Wishing you well! Barbara
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Old 06-04-2007, 08:38 AM   #4
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goldenwings HB User
Re: I'm back - again !!

Hello realisticchic,

Has your doctor recommended this treatment for you ? I only ask because it is something as a "last resort" type of thing. I cannot take any NSAID's, and all other things failed miserably. My outlook for treatment was bleak until this was suggested to "try".

Take care.

goldenwings
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

 
Old 06-04-2007, 03:04 PM   #5
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realisticchic HB User
Re: I'm back - again !!

If you are referring to the injections of cortisone for the costochondritis, yes, it has been made available to me, as I too do not tolerate NSAIDS. I have always been too frightened of the pain of the injection itself, and of how bad I would hurt until the shot took effect , so I have always declined......Now I have a bad headcold, which led to congestion and coughing......I'm sure I don't have to tell you how bad that feels, and I'm rethinking my decision. As for Botox injections, My eye Dr. suggested those to stop my eyeball/eyelid twitching.......I declined because it is a toxin, and I was worried that because of the sle I would be more likely to have a bad reaction than the average person.

 
Old 06-04-2007, 04:37 PM   #6
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goldenwings HB User
Re: I'm back - again !!

Hi realisticchic,

As I said previously, it was only when you mentioned the botox injections that I realised what they most probably would do for me in connection with my dystonia. This is why I am going to speak to Dr. Wallace if possible to ask him just for general information about the effects o having this with SLE. I am certain I am not having it anyway though - like I said it's a poison and not for me.

Well the costochondritis problem is greatly eased for me personally with the steroid injections. When they are given they are a mixture of anaesthetic for pain killing properties and steroids. The discomfort comes when you are injected not so much for the needle going in as the pressure that is applied to the very sore areas. The doctor obviously has to really press into your ribs to make sure he injects the tenderest points.

When the anaesthetic wears off, you are left with pain but it isn't excruitiating, just very tender and you feel a bit stiff in the areas injected. After about 3/4 days, you can actually feel the relief coming through. No quick movements though because this will pull the injection sites. After that, yes, the difference is tremendous.

I have my injections from beneath the collar bone area to where the ribs curve round at the bottom, on each side. It all depends on which part of my chest/ribs is most tender as to where the injections are actually given.

It is suggested that they are only done every 4 months or so because data given out on this type of treatment suggests that steroids can impede cartilage metabolism and accelerate cartilage breakdown when used in this way.

I really think if you get the chance you should do it rc. Let me know what you think. TAke care.

goldenwings
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

Last edited by goldenwings; 06-04-2007 at 04:44 PM.

 
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