Re: sarc in spinal column

[Guest guest]

To: neurosarcoidosis@...; Neurosarcoidosis ; Neurosarcoidosis-owner ; Darlene-N.S. Sent: Fri, May 20, 2011 11:54:25 AMSubject: sarc in spinal column

Does anyone have any experience or knowledge re. sarcoid of the spinal column? Diagnosed Sept., 2008 with sarchoid of the brain and spinal cord. Started on prednisone 80mg. daily, 6 months later, there were no sign of any lesions. I slowly was titrated off the prednisone, last dose was Dec., 2009. A m.r.i. taken April, 2010, showed some abnormalities, that were barely detectable. Because they were so focused on my brain and spinal cord, no one paid attention to the spinal column. So it appears 3 months after going off the prednisonen the sarcoid returned but in a different. Because I am not showing any symptoms, the neurologist at Mayo, does not want to treat, until I show sign of vertebrae pressing on the spinal cord. Has anyone had sarcoid that stayed the same in re. to size? Or has anyone had sarcoid that just went away on it's own, without treatment?

Would deeply appreciate any answers. I read some of your stories, and am so amazed at your strength. God bless all of you and you all will remain in my prayers daily.

[Guest guest]

I was diagnosed with sarcoid in 2006. It presented in my sinus/nasal cavitiy and

the outer part of my eye socket. It took a long time for the docs to figure out

that a sarcoid lesion was on my spinal cord and diagnose me with neurosarcoid

(in 8/10). Prior to that time, I slowly started having (in 9/09) pain, burning

and numbness in both legs, then lost my ability to balance and walk without a

cane. I've had to use a walker daily to get around since (1/10). I have to use a

walker on a daily basis now. I'm only 44 yrs. old and it make me somewhat angry

at times. I have my good days, and I have my bad days. I'm takiing prednisone,

plaquenil and cell cept daily.

>

> Does anyone have any experience or knowledge re. sarcoid of the spinal

column? 

> Diagnosed Sept., 2008 with sarchoid of the brain and spinal cord. Started on

> prednisone 80mg. daily, 6 months later, there were no sign of any lesions.  I

> slowly was titrated off the prednisone, last dose was Dec., 2009.  A m.r.i.

> taken April, 2010, showed some abnormalities, that were barely detectable. 

> Because they were so focused on my brain and spinal cord, no one paid

attention

> to the spinal column.  So it appears 3 months after going off the prednisonen

> the sarcoid returned but in a different.  Because I am not showing any

symptoms,

> the neurologist at Mayo, does not want to treat, until I show sign of

vertebrae

> pressing on the spinal cord.  Has anyone had sarcoid that stayed the same in

re.

> to size?  Or has anyone had sarcoid that just went away on it's own, without

> treatment?

>

> Would deeply appreciate any answers.  I read some of your stories, and am so

> amazed at your strength.  God bless all of you and you all will remain in my

> prayers daily.

>