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Sarcoidosis and the spine
16 years 4 months ago #5584
by ~mark~
Replied by ~mark~ on topic Re:Sarcoidosis and the spine
I saw the neuro and i do not have a herniated disc. i have \"something\" but the neuro pretty much said he would not cut on me and nor did he have any experiece with sarcodosis. He also had no suggestions on what i should do other than go back to the pain Dr. for more meds and blocks. This is not an option. I won't be an opiate junkie. The neuro was an arse, very narrow minded. Personally I believe he was unprepaired and I caught him with my questions so he cut and ran. What an ass clown. The pain is better from the nerve block but it has been worsening again. I am trying to figure out my next move. As always, the health care network has failed me again. It is all I can do to work. I have no quality of life beyond that. Will post when i know more.
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16 years 4 months ago #5588
by ducky
Replied by ducky on topic Re:Sarcoidosis and the spine
I am really sorry to hear that you are still in dreadfull pain... i hope and pray sombody will be able to help you.. I cant help much ..but we on the site are here for you if needed... x
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- TheLadyMagenta
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16 years 4 months ago #5590
by TheLadyMagenta
Replied by TheLadyMagenta on topic Re:Sarcoidosis and the spine
HUGS to you i wish that pain on no one. My back is bad but nothing like this im sure. Hope you get the right help soon my friend. Lady M xx
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16 years 4 months ago #5664
by suzan
Replied by suzan on topic Re:Sarcoidosis and the spine
hi mark:)
im real sorry you are in so much pain......it dont help when you feel let down by yr medical support network either..................sarcoidosis is a difficult disease to control for some...and having multisystem involvement makes its management more difficult.......in addition is the fact that sarcoid can run in concurrance with other physical problems.
i really advice you to try to find a hospital and consultant who can give management and treatment of your multisystem sarcoid.......and who will work in liason with yr gp..so that you have immediate refernce point local to yr home.
i realise that in the united states health care provision is very patchy.....ive heard that there is a north-east corridoor of research and teaching hospitals where health care is pretty good..........i wonder if there is anyway that you can link up with them?......................just an idea...i hate feeling so useless here.
you are under a lot of stress too...you are still working...welldone for that.. .... ...........here we are very familiar with the pressure this can put on yr home life...........................
you gotta hang on in there my friend.......keep as strong as you can..............know we are here for you....
and when youre ready...put the INION back in opiated,,,and kick ass
suz xx
im real sorry you are in so much pain......it dont help when you feel let down by yr medical support network either..................sarcoidosis is a difficult disease to control for some...and having multisystem involvement makes its management more difficult.......in addition is the fact that sarcoid can run in concurrance with other physical problems.
i really advice you to try to find a hospital and consultant who can give management and treatment of your multisystem sarcoid.......and who will work in liason with yr gp..so that you have immediate refernce point local to yr home.
i realise that in the united states health care provision is very patchy.....ive heard that there is a north-east corridoor of research and teaching hospitals where health care is pretty good..........i wonder if there is anyway that you can link up with them?......................just an idea...i hate feeling so useless here.
you are under a lot of stress too...you are still working...welldone for that.. .... ...........here we are very familiar with the pressure this can put on yr home life...........................
you gotta hang on in there my friend.......keep as strong as you can..............know we are here for you....
and when youre ready...put the INION back in opiated,,,and kick ass
suz xx
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16 years 3 months ago #6303
by ~mark~
Replied by ~mark~ on topic Re:Sarcoidosis and the spine
Thanks all for your supportive posts. I am going to Ohio State University hospital's Spine institute on August 13th. The options from the last neuro was pain meds. A cruel joke. My back is still a problem and is affecting my employment so i feel I must pursue this to its fruition. My Primary physician has ran more labs and as usual my inflamation markers are off the charts. I am currently taking the last class of meds being used to treat sarcoidosis, Biologics, and the opinions are that if the sarc has indeed attacked my spine than chemo will probably be needed. This is the reason i am going to have more imaging and possibly a biopsy. I will repost when i have the results. Sarcoidosis of the spine is extremily rare so I have that in my favor. The pain is moving down both legs now but it is not as severe as the first month when it all started. Thanks again. Mark
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- Visitor
16 years 3 months ago #6315
by
Replied by on topic Re:Sarcoidosis and the spine
Blimey Mark ,my friend...seems you need me over there to..kick-bottoms on your behalf xxxx
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