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suzan
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Re:neurosarcoidosis - 2008/09/12 10:49 heres something i saw on the web...

from yahoogroups neurosarcoidosis mail
Liver sarc can cause some water retention--- and the inflamation in the joints and ligaments are part of sarcoidosis- -- not usually caused by the liver issue. It's just part of the overall systemic inflammation.
My experience has been that when I'm retaining fluid-- I'm dehydrated. Our body is telling us that it thinks we aren't going to get enough fluids in-- so it's going to save some of what we do drink -- in bad places.
Seriously, you should be drinking at least 2/3 of a gallon of water daily, that's about 5 Liters for those of you that aren't on US measures-- and the first few days, you'll not only blow up with extra fluid in your hands and feet, but as soon as your body sees that you aren't depriving it of water, then you start peeing. Within a day or two after the great pees, your urine should be virtually clear, or very, very pale yellow.
You will also find that the inflammation in those joints and ligaments and muscles is so much better! The joints should "float" in synovial fluid, but if you aren't getting enough fluids-- you get the compression and toxic effect of the fluid--as it's not getting flushed out and replaced with the right electroylytes to keep it balanced.
How are your Liver enzymes--- do your docs order LFT's? (Liver Function Tests). This could tell us alot about what is going on -- as there are certain signals (High Alkaline Phosphatate) levels are significant for sarc involvement, but it can also be high if you are dehydrated. Remember, summer requires even more deligence in hydration than even winter--so drink up-- get the Milk Thistle, (or order LivaTone online) and help that liver to detox.



5litres sounds like a lot..hope kidneys can cope with that...i dont know much about fluid intake.....but maybe it can help??
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suzan
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sarcoidosis petition - 2009/02/05 17:39 please support this petition :

http://petitions.number10.gov.uk/sarcoidosisaware/


from:
Visit U.K. Sarcoidosis Information and Support Group. at: http://sarcoidosissupport.ning.com


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~mark~
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Re:sarcoidosis petition - 2009/02/06 00:37 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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suzan
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Re:sarcoidosis petition - 2009/02/07 13:25 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..

http://www.ablehere.com/component/option,com_joomlaboard/Itemid,8/func,showcat/catid,22/


be nice to see you there too...

suz xx
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tim_c
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Re:neurosarcoidosis - 2009/03/28 01:47 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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suzan
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Re:neurosarcoidosis - 2009/03/29 14:25 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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