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Sarcoidosis and the spine 12 years 4 months ago #4351

  • ~mark~
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Hi all, I haven't been here for a few days and wanted to post why. I awoke last Tuesday morning at 4:45am and was unable to get out of bed. I had severe pain in my lumbar back. I finally crawled out of bed around 11am to use the loo. Long story short is that the sarcoidosis may be attacking my spine. Had an MRI which showed disc dehydration at L4/5 and a protrusion at L3/4 abutting the right nerve. I am now awaiting an appointment with a neurologist. More studies and probably surgery. I won't know anything else until then. It is very difficult for me to sit and type so I probably won't be around much for a while. I will update when i can. Wish me luck. Lots of pain here. When it rains it poor's.:(

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Re:Sarcoidosis and the spine 12 years 4 months ago #4355

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I am sorry to hear you are in a lot of pain..I wish you luck and my regards to you and family xxx

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Re:Sarcoidosis and the spine 12 years 4 months ago #4378

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~mark~ wrote:

Hi all, I haven't been here for a few days and wanted to post why. I awoke last Tuesday morning at 4:45am and was unable to get out of bed. I had severe pain in my lumbar back. I finally crawled out of bed around 11am to use the loo. Long story short is that the sarcoidosis may be attacking my spine. Had an MRI which showed disc dehydration at L4/5 and a protrusion at L3/4 abutting the right nerve. I am now awaiting an appointment with a neurologist. More studies and probably surgery. I won't know anything else until then. It is very difficult for me to sit and type so I probably won't be around much for a while. I will update when i can. Wish me luck. Lots of pain here. When it rains it poor's.:(


God Bless you Mark..from The Old Country...It sounds like my early symptoms with AS.....Thinking and praying for you xxxx;)

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Re:Sarcoidosis and the spine 12 years 4 months ago #4445

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mark im sorry to hear re all this....i do hopw you can get a quick appointment with the neurologist.

its a tough time for you right now....please know that yr friends here thinking of you...and wishing you well soon.

hugz to you my friend....xx suzan xx

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Re:Sarcoidosis and the spine 12 years 4 months ago #4544

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Thanks all, I am getting a nerve block for the pain on the 25th, and the neuro I trust is on holiday so I won't see him until July 21st. I am expecting surgery as I have a protrusion at L3/4 and disc dehydration at L4/5. The protrusion is abutted against the root causing me much pain. Fluid around my spine is distributed unevenly. I will update when I can.

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Re:Sarcoidosis and the spine 12 years 4 months ago #4546

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~mark~ wrote:

Thanks all, I am getting a nerve block for the pain on the 25th, and the neuro I trust is on holiday so I won't see him until July 21st. I am expecting surgery as I have a protrusion at L3/4 and disc dehydration at L4/5. The protrusion is abutted against the root causing me much pain. Fluid around my spine is distributed unevenly. I will update when I can.


Stay with it Big Guy...I dont usualy use that stuff..but got to make you feel comfortable xxxxx ;) ;) ;)

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Re:Sarcoidosis and the spine 12 years 3 months ago #5584

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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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Re:Sarcoidosis and the spine 12 years 3 months ago #5588

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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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Re:Sarcoidosis and the spine 12 years 3 months ago #5590

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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Re:Sarcoidosis and the spine 12 years 3 months ago #5664

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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

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Re:Sarcoidosis and the spine 12 years 2 months ago #6303

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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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Re:Sarcoidosis and the spine 12 years 2 months ago #6315

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Blimey Mark ,my friend...seems you need me over there to..kick-bottoms on your behalf xxxx ;) ;)

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