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Old 05-21-2007, 05:23 PM   #1
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Yet another thing to work on

Hello everyone,

Not been here for a while - again. A couple of weeks ago I travelled to the mainland and went to have more nerve conduction tests done. As some of you know alongside my SLE I have a nerve and muscle wasting illness - well the original diagnosis was confirmed and I was told again there was no cure. This I knew so no problem. Then the bombshell. I also have dystonia.

I am going to see my neurologist here on the island and he is to arrange for me to have injections into the affected parts.

Hey ho, it's never ending isn't it ?

I do hope everyone is coping ok at the moment. Love to you all.

Take care.

goldenwings
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Old 05-22-2007, 05:22 AM   #2
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Re: Yet another thing to work on

Goldenwings
Good to hear from you again! Not to be rude, but, what is dystonia? and, What symptoms does it cause? What will the shots do? Did your Lupus cause the Dystonia, or is it an unrelated thing?
I hope things start to get better for you soon, and I admire your courage in the face o such adversity Sending you ((((((((hugs)))))))) and prayers, take care

 
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Old 05-22-2007, 06:27 AM   #3
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Re: Yet another thing to work on

Goldenwings,

Sorry to hear you've had the latest bombshell dropped on you. Sounds like you are in desperate need of some good news when seeing the doctor instead of this.

(((hugs)))
ljs

 
Old 05-22-2007, 09:10 AM   #4
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Smile Re: Yet another thing to work on

Hiya realistichic,

You're not being rude at all. I myself had to come home and double check as to what it is. My good friends' Mum actually knows someone with it, so was able to get me some information.

Basically it is spasms and contractions of the muscles and in my case it is extremely painful. I don't know anyone else with it so I don't know how others are painwise. The symptoms are not able to be controlled by the person with dystonia. It causes repetitive movements of parts of the body, and also make one have abnormal postures in the part of the body that is affected.

I only have limited muscle movement in much of my body and this is affecting my hands and lower arms at the moment. I cannot staighten my hands out in the "normal" way, they have to be pulled straight.

It can affect affect virtually any single part of the body or several different areas at once. It affects adults, but can also develop in childhood but then the pattern is generally different from adult-onset dystonia.

When it starts in childhood it usually begins in the leg or foot and commonly spreads to involve the entire body. If dystonia begins in adult life it tends to be more localised, usually affecting one part of the body, such as the neck or hand.

It is a movement disorder. Although the causes of dystonia are not fully known it is currently thought that the condition results from a malfunction in a part of the brain called the basal ganglia. The basal ganglia are structures situated deep in the brain. They help to regulate voluntary and involuntary movement by controlling muscle contractions in the body. Maybe because of my wasting illness, I have this too, I honestly don't know.

No, it isn't anything to do with having SLE. Please don't worry.

The injections, as far as I can gather, will relax the affected muscles and in doing so will stop the contractions and spasms from happening with such force. I sure hope so.

You know though, I feel that I have had mountains put in my way and been caught up in raging torrents, fought unseen enemies for most of my life but I have always battled to come through. Yes, I am scared of this latest development but I will fight and fight and if there is a treatment out there, I am willing to give it a go so that I can carry on carrying on and being me.

Thanks for your lovely kind words.

Take care.

goldenwings
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Old 05-22-2007, 09:13 AM   #5
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Smile Re: Yet another thing to work on

Hello ljs,

Pleased to meet you. Thank you for your warm words and for taking the time to come and talk to me. It means a lot.

Take care.

goldenwings
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Old 05-23-2007, 06:05 AM   #6
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Re: Yet another thing to work on

Thank you for the info Goldenwings. I understand it a lot better now. The shots they will be giving you to relax the muscles, are they Botox shots? If they are, will they give you a test shot first to make sure you aren't allergic to the Botox? I hope the treatment they have planned works and you are able to get some pain relief and better use of your hands

 
Old 05-23-2007, 06:23 AM   #7
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Smile Re: Yet another thing to work on

Hiya realisticchicc

Gosh, you know I haven't evene thought of what the shots might be. Botox !! Don't fancy that one bit actually. It's a poison and it isn't going into my body, no way hee hee !!

It is something for me to think about now and I will discuss it on Friday with my lupus consultant first, as I haven't got an appointment with my neurologist yet. Hey ho !! Thanks for mentioning it to me.

Take care.

goldenwings
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Last edited by goldenwings; 05-23-2007 at 07:37 AM. Reason: total goobbeldygook typing at the moment

 
Old 05-23-2007, 03:16 PM   #8
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Re: Yet another thing to work on

The reason i mentioned it is because, along with tremors in my arms, I have them in my right eye lid and eyeball both, looks like someone in rem sleep while blinking madly ........Eye Dr. wanted me to see a specialist to get, you guessed, botox injections ......I said, if it gets to the point where it is constant or my eye is stuck shut maybe......not now though . I figure when I am having a bad day, with tremors in both arms and the eye frequently, I will just occassionally grunt, snort or blurt out an obscenity and pass for tourrettes

 
Old 05-23-2007, 04:59 PM   #9
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Smile Re: Yet another thing to work on

Hiya rc,

Oh, you did make me laugh 'cos I have the eyelid thing going on and have done for a long time. My husband tells me off and says it happens more when there are men in the vicinity and calls me a brazen hussy hee hee !! Worse thing is when I am having a one to one conversation and it happens. The person I am speaking to is mesmerised by it. What a giggle though. It is an odd sensation though isn't it ?

I have a nodding head at times too. I look like one of them there nodding dogs that people used to have in the back of their cars years ago.

I throw my body about quite a bit because of this nerve and muscle wasting problem, so all in all it is a good job I can laugh at myself. My husband imitates things I do, and if we are outside people look at him and you can imagine them saying "oh, isn't he awful to her". It is our way of getting on with things though.

I am glad you too can laugh at a bad situation and get on with it as best you can.

Take care.

goldenwings
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Old 05-24-2007, 04:24 AM   #10
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Re: Yet another thing to work on

Hi, GW. I'm so sorry to learn this. I've only heard of dystonia, so I have to read up. My dad had movement problems that were poorly understood, then finally deemed Parkinson's---so it's really good that you've gotten established with a neurologist. I hope you find out more soon & get a plan together that both neuro & rheumie agree on. Sending huge hugs to you & to hubby, with PK's (puppy kisses) from small dog. Always, Vee

 
Old 05-24-2007, 06:26 AM   #11
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Smile Re: Yet another thing to work on

Hiya Vee,

Lovely to hear from you. Yes, things will get worked out but one gets to thinking "what else". Never mind, as I said I carry on carrying on. The only thing to do really isn't it ?

I do hope you are doing ok, Thank you for the pk's, they have made my day hee hee !! My husband says hi.

Take care

goldenwings
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Old 05-25-2007, 10:38 AM   #12
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Re: Yet another thing to work on

Hi Goldenwings -

Bummer that there's yet more for you to deal with. Good you and your DH have kept your sense of humor.

Sending hugs and wishing you well - Barbara
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