Guest guest Posted June 23, 2010 Report Share Posted June 23, 2010 So the spine doctor has not ruled out a sarcoidosis indentiy in my foot weakness....which makes me even more confussed. The doctor whom read my mri statedI no sign of sarcoidosis. However the spine doctor stated that there could be inflamation from sarcoidosis in my pelvic region which could be putting pressure on a nerve so off for yet another CT scan on Friday. However I noticed today that I am improving and wonder if a EMG and the steriod spinal injection is still necessary, hate to go through that to be honest.... To: neurosarcoidosis Sent: Mon, June 21, 2010 6:13:48 PMSubject: oops, I did it again! Forgot the link to American Chronic Pain Association/ neuropathic pain! http://www.theacpa. org/conditionDet ail.aspx? id=29 Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 The New Busy think 9 to 5 is a cute idea. Combine multiple calendars with Hotmail. Get busy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2010 Report Share Posted June 24, 2010 DIanna,I have neuroSarc, and my MRI was neg. But my neurologist told me that due to my symptoms I had Sarc in my spine and the base of my brain. my whole left side is weak, 50% reduction in my left arm, I can't walk very far, my legs get heavy and my feet feel like lead, starting with the left, it will start to drag first. Personally I think you need a long term treatment. I even met with a pain doctor who mentioned a steroid spinal injection, and told me he didn't really think it would do much, but I could try, I choose not to. He said the problem is more related to where the granulomas or the swelling is located, and it would for sure be a hit or miss try. For me the medication that has helped me the most is Remicade, I am also on Metotrexate, and Plaquanil, and the combination is helping. I am able to walk more, longer and better. I had a real balance issue, and that is much better too. The CT scan will probably not show anything either, that is why this can be so madding, my doctor treats me according to my symptoms. When I tell him I need an IV steroid burst of 3 days, he says OK, then why. Do you have any skin lesions, because reports say that if you have skin lesions, you have internal lesions. Good luck, but don't let them put you through Hell, I've been there and it doesn't help, only makes things worse. your in my prayers. Blessings, Marla So the spine doctor has not ruled out a sarcoidosis indentiy in my foot weakness....which makes me even more confussed. The doctor whom read my mri statedI no sign of sarcoidosis. However the spine doctor stated that there could be inflamation from sarcoidosis in my pelvic region which could be putting pressure on a nerve so off for yet another CT scan on Friday. However I noticed today that I am improving and wonder if a EMG and the steriod spinal injection is still necessary, hate to go through that to be honest.... To: neurosarcoidosis Sent: Mon, June 21, 2010 6:13:48 PMSubject: oops, I did it again! Forgot the link to American Chronic Pain Association/ neuropathic pain! http://www.theacpa. org/conditionDet ail.aspx? id=29 Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 The New Busy think 9 to 5 is a cute idea. Combine multiple calendars with Hotmail. Get busy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2010 Report Share Posted June 24, 2010 Marla thank you for your inputs...I really don't want this injection....and I am just so frustrated not knowing what to do...they rely on test that aren't going to show them anything? But the good news is I almost complete use of my right foot. Does this make sense? Does this come and go? How did they find the sarc in your spine? I haven't seen a neruologist, I wonder if this is the way to go rather then a spine doctor. I don't have any skin lesions. To: Neurosarcoidosis Sent: Thu, June 24, 2010 6:35:16 PMSubject: Re: oops, I did it again! DIanna,I have neuroSarc, and my MRI was neg. But my neurologist told me that due to my symptoms I had Sarc in my spine and the base of my brain. my whole left side is weak, 50% reduction in my left arm, I can't walk very far, my legs get heavy and my feet feel like lead, starting with the left, it will start to drag first. Personally I think you need a long term treatment. I even met with a pain doctor who mentioned a steroid spinal injection, and told me he didn't really think it would do much, but I could try, I choose not to. He said the problem is more related to where the granulomas or the swelling is located, and it would for sure be a hit or miss try. For me the medication that has helped me the most is Remicade, I am also on Metotrexate, and Plaquanil, and the combination is helping. I am able to walk more, longer and better. I had a real balance issue, and that is much better too. The CT scan will probably not show anything either, that is why this can be so madding, my doctor treats me according to my symptoms. When I tell him I need an IV steroid burst of 3 days, he says OK, then why. Do you have any skin lesions, because reports say that if you have skin lesions, you have internal lesions. Good luck, but don't let them put you through Hell, I've been there and it doesn't help, only makes things worse. your in my prayers. Blessings, Marla On Wed, Jun 23, 2010 at 7:03 PM, Dianna Voegele <dvoegele (AT) verizon (DOT) net> wrote: So the spine doctor has not ruled out a sarcoidosis indentiy in my foot weakness.... which makes me even more confussed. The doctor whom read my mri statedI no sign of sarcoidosis. However the spine doctor stated that there could be inflamation from sarcoidosis in my pelvic region which could be putting pressure on a nerve so off for yet another CT scan on Friday. However I noticed today that I am improving and wonder if a EMG and the steriod spinal injection is still necessary, hate to go through that to be honest.... From: Rose <mamadogrose@ hotmail.com>To: neurosarcoidosis@ yahoogroups. comSent: Mon, June 21, 2010 6:13:48 PMSubject: oops, I did it again! Forgot the link to American Chronic Pain Association/ neuropathic pain! http://www.theacpa. org/conditionDet ail.aspx? id=29 Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 The New Busy think 9 to 5 is a cute idea. Combine multiple calendars with Hotmail. Get busy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2010 Report Share Posted June 24, 2010 What is a steroid burst To: Neurosarcoidosis Sent: Thu, June 24, 2010 6:35:16 PMSubject: Re: oops, I did it again! DIanna,I have neuroSarc, and my MRI was neg. But my neurologist told me that due to my symptoms I had Sarc in my spine and the base of my brain. my whole left side is weak, 50% reduction in my left arm, I can't walk very far, my legs get heavy and my feet feel like lead, starting with the left, it will start to drag first. Personally I think you need a long term treatment. I even met with a pain doctor who mentioned a steroid spinal injection, and told me he didn't really think it would do much, but I could try, I choose not to. He said the problem is more related to where the granulomas or the swelling is located, and it would for sure be a hit or miss try. For me the medication that has helped me the most is Remicade, I am also on Metotrexate, and Plaquanil, and the combination is helping. I am able to walk more, longer and better. I had a real balance issue, and that is much better too. The CT scan will probably not show anything either, that is why this can be so madding, my doctor treats me according to my symptoms. When I tell him I need an IV steroid burst of 3 days, he says OK, then why. Do you have any skin lesions, because reports say that if you have skin lesions, you have internal lesions. Good luck, but don't let them put you through Hell, I've been there and it doesn't help, only makes things worse. your in my prayers. Blessings, Marla On Wed, Jun 23, 2010 at 7:03 PM, Dianna Voegele <dvoegele (AT) verizon (DOT) net> wrote: So the spine doctor has not ruled out a sarcoidosis indentiy in my foot weakness.... which makes me even more confussed. The doctor whom read my mri statedI no sign of sarcoidosis. However the spine doctor stated that there could be inflamation from sarcoidosis in my pelvic region which could be putting pressure on a nerve so off for yet another CT scan on Friday. However I noticed today that I am improving and wonder if a EMG and the steriod spinal injection is still necessary, hate to go through that to be honest.... From: Rose <mamadogrose@ hotmail.com>To: neurosarcoidosis@ yahoogroups. comSent: Mon, June 21, 2010 6:13:48 PMSubject: oops, I did it again! Forgot the link to American Chronic Pain Association/ neuropathic pain! http://www.theacpa. org/conditionDet ail.aspx? id=29 Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 The New Busy think 9 to 5 is a cute idea. Combine multiple calendars with Hotmail. Get busy. Quote Link to comment Share on other sites More sharing options...
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