Re: Re: sarc in spinal column

[Guest guest]

Hi I am Jackie. I to have neurosarcoid. Mine started with sinus infections and went to my brain. I just lost all control and balance in about one month. I am now in a chair but I use the walker as much as possible. I cannot walk far and tire real fast.

I was 55 when I was diagnosed and it made me angry and still does.

I worked full time, I rode motorcycle, I played with my grandchildren and did everything for myself. I went from walking six miles a day to laying flat on my back not able to move anything but my head. I am 500% better now.

I still get the self pity thing going I remember what my dad told me. "I cried because I had no shoes until I saw the man that had no feet." It has kept me going.

I am active as I can be. I am on the board of the ADRC (aging and disability resources center) I am on the board of the retirement complex I live in. I am heavy into crafting and I found it doesn't matter that I cannot walk and run like I did before. My grandchildren still like to play with me. Of course they are teens now but It is wonderful.

I take prednisone, Methotrexate, and plaquenil. I too have good days and bad.

You will find this group will let you cry, complain, vent and even laugh. I am so glad I found my sarc family. The information and knowledge is surpassed by none.

Welcome to our family and know you are not alone.

My prayers are with you as you struggle from day to day.

Jackie

Today I broke my Personal Record;;;;;;;; I am STILL ALIVE............

Re: sarc in spinal column

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.>

[Guest guest]

Thanks for sharing your story Jackie. I've been kind of down in the dump lately and I am fartunate to have found this Group. It's good to see that you have a good attitude/outlook despite sarcoidosis and it's aftermath. I'm going to start seeing the glass half full instead of half empty. I still really enjoy playing games etc. with my 7 yr. old granddaughter. She now holds my hand to help me keep my balance walking across the street and so forth. Grandchildren are great gift and joy. I'm glad I'm still here to have this pleasure.

Subject: Re: Re: sarc in spinal columnTo: Neurosarcoidosis Date: Thursday, May 26, 2011, 9:53 PM

Hi I am Jackie. I to have neurosarcoid. Mine started with sinus infections and went to my brain. I just lost all control and balance in about one month. I am now in a chair but I use the walker as much as possible. I cannot walk far and tire real fast.

I was 55 when I was diagnosed and it made me angry and still does.

I worked full time, I rode motorcycle, I played with my grandchildren and did everything for myself. I went from walking six miles a day to laying flat on my back not able to move anything but my head. I am 500% better now.

I still get the self pity thing going I remember what my dad told me. "I cried because I had no shoes until I saw the man that had no feet." It has kept me going.

I am active as I can be. I am on the board of the ADRC (aging and disability resources center) I am on the board of the retirement complex I live in. I am heavy into crafting and I found it doesn't matter that I cannot walk and run like I did before. My grandchildren still like to play with me. Of course they are teens now but It is wonderful.

I take prednisone, Methotrexate, and plaquenil. I too have good days and bad.

You will find this group will let you cry, complain, vent and even laugh. I am so glad I found my sarc family. The information and knowledge is surpassed by none.

Welcome to our family and know you are not alone.

My prayers are with you as you struggle from day to day.

Jackie

Today I broke my Personal Record;;;;;;;; I am STILL ALIVE............

Re: sarc in spinal column

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.>

[Guest guest]



that is so sweet about your grandchildren. Mine were 12 12 11 10 when I came home from the nursing home. They were and still are so helpful to me. I do a lot of crafting so all four of them (two boys) love to sit and craft with gramma. They make me smile and make me want to get up and walk. I am getting better at that.

I guess God gave me sarc for a reason, at times I can't figure out what but I think My family needed me home more instead of working all the time. And I am really big in volunteering.

Life is still good. Just in a different way.

Jackie

Today I broke my Personal Record;;;;;;;; I am STILL ALIVE............

Re: sarc in spinal column

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.>

[Guest guest]

Jackie said:

Life is still good. Just in a different way.

Jackie, you are like a walking bumper sticker! Love it.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

thank you....

Today I broke my Personal Record;;;;;;;; I am STILL ALIVE............

RE: Re: sarc in spinal column

Jackie said:

Life is still good. Just in a different way.

Jackie, you are like a walking bumper sticker! Love it.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

Your the best Jackie//Thanks for the encouragement-Connie

To: neurosarcoidosis Sent: Sat, May 28, 2011 6:17:11 PMSubject: RE: Re: sarc in spinal column

Jackie said:

Life is still good. Just in a different way.

Jackie, you are like a walking bumper sticker! Love it.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22