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sarcoidosis

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15 years 9 months ago #17075 by ~mark~
Replied by ~mark~ on topic Re:sarcoidosis petition
great petition, I can't sign as I am that crazy yank. Miss you Suz. Hope things are getting along ok for you.

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15 years 9 months ago #17153 by suzan
Replied by suzan on topic Re:sarcoidosis petition
:) :) :) nice to see you here again mark..:) ....been missing you too...:) ....am ok thanks.....not sure if my weariness is down to the sarcoid or just cos im getting old!!


why not come and chat in chitchat forum..:)

www.ablehere.com/component/option,com_jo...nc,showcat/catid,22/


be nice to see you there too...:)

suz xx

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15 years 7 months ago #20496 by tim_c
Replied by tim_c on topic Re:neurosarcoidosis
It seems variable.

I worked with someone who suffered probably starting during the 1980s.

He was perhaps lucky and it didn't do too much major damage. Today he is semi-retired and gets by well enough. Mostly spinal problems and pain from that.

Treatment, there wasn't anything, just pain killers and hope it burns out.

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15 years 7 months ago #20642 by suzan
Replied by suzan on topic Re:neurosarcoidosis
yes my neurosarcoid started back in the 80s too.....then there wasnt much awareness of sarcoid, let alone neurosarcoid......my treatment then was with high dose steroids and also other antiinflammatories like methotrexate......it was, and still is a trial and error affair to get the sarcoid under control , and very much is geared to individual response.


these days the medical proffession is becoming more aware of sarcoid, but still not aware enough....hence the petition listed above..........sarcoid can cause permanent scarring of whatever organ involved, and it is essential to get the inflammation under control to minimise damage....also it mimics other illnesses, and is easy to misdiagnose a person, when in fact they do have sarcoidosis.




tim c...yes it is extremely variable...your friend was lucky, he has got through it with just painkillers.....steroids have been the first line of attact for some time now..;) :)

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3 years 2 days ago #70129 by Able_Here_Team
Replied by Able_Here_Team on topic Re:neurosarcoidosis
Living With Sarcoidosis & Other Chronic Health Conditions: Patient Stories, Support Options, Insurance Tips & A Doctor Interview, Written From A ... Reinforce The Fact...You're Not Alone
Living With Sarcoidosis & Other Chronic Health Conditions gives first hand accounts of what life is like when you experience chronic health conditions, as only a patient can articulate, by way of patient stories, support options, insurance tips and a doctor interview.

Although each situation is unique, they are also so similar and it's those similarities that helps us cope in a positive manner with our current situations, regardless if you are the patient, caregiver, medical professional, employer or just a friend.

The importance of understanding your reality, honestly accepting that reality, therefore being able to live a positive and productive life, is the constant message the book stresses by way of living examples. This book strictly gives a patient's perspective of the many aspects of life with chronic health conditions and is both informative and inspirational as to how to achieve positive goals, as living with a chronic health condition affects all aspects of your life along with those "others" in your life as well.

It's a must read for anyone who lives with or knows someone with a chronic health condition especially a mysterious disease such as sarcoidosis. There will be something that will touch some aspect in everyone's life!


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