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Is anyone else here suffering with Arachnoiditis ?

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5 years 7 months ago #9809 by di
di replied the topic: Re: Is anyone else here suffering with Arachnoiditis ?
Some days certainly can be unpredictable Mary.

It was you that mentioned you have no connections with the authors... Your written post's highlighted in the blue.
So I should have too then!!! LOL. *grin*.

I was put onto the book by my pain management psychiatrist.

With Christmas approaching fast, you and all of us will need to pace ourselves and stay with in our limitations.
Well... It sound easy when you type it!

Di

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5 years 7 months ago #9810 by Mary
Mary replied the topic: Re: Is anyone else here suffering with Arachnoiditis ?
DUH! I knew I had written it somewhere but I couldn't remember where and when I saw your post, I didn't read all of my quote!

Mary

Not every day is a good day, but there is good in every day.

"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables

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5 years 7 months ago #9847 by csgeekychick
csgeekychick replied the topic: Re: Is anyone else here suffering with Arachnoiditis ?
You are the only other person that I have ever heard to have it, my brother has it as the result of a myelogram and spinal surgery in the 80's there is an Australian support group for it online that may have some clearer answers for you, it should come up in a google search :)

I will
not
define
myself
by my
pain.

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5 years 7 months ago #9851 by di
di replied the topic: Re: Is anyone else here suffering with Arachnoiditis ?
Hi csgeekychick ,

Thanks, I have seen the Aust. forum for Arachnoiditis. They don't have a chat forum attached to the site but I am planning on having a look in more detail. :)

I'd dearly like to know more about how your brother's coping and what, if any, progressive stages he's experienced with this disease.
I can only be humbled and imagine his sacrifices and huge bank of knowledge needed to live with and manage Arachnoiditis for over 30 years... :ohmy:

The sheer thought terrifies me actually! :(

Di
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5 years 7 months ago #9853 by csgeekychick
csgeekychick replied the topic: Re: Is anyone else here suffering with Arachnoiditis ?
Hi Di, I can ask him if he would like to share but I can't guarantee he will as he has other issues he is dealing with as a result of treatments, he was undiagnosed/misdiagnosed until the mid 90's and some of the treatments only made more problems for him. I will tell you that you really need to make sure you have a specialist that has had a good grounding with Arachnoiditis and with no complications and good pain management your outcome will likely be better then you think, most of my brothers problems stem from "specialists" that had no idea of what they were doing or facing :(

LOL ever get the feeling that genetically god was laughing his arse off at your family when he was handing out genetics :blink:

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myself
by my
pain.

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5 years 7 months ago #9881 by di
di replied the topic: Re: Is anyone else here suffering with Arachnoiditis ?
I fully understand if he's not up for talking about his issues csgeekychick. It's cool. ♥
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