Re: Vasculitis, Lymphoma, CNSV

January 25, 2006

funny you say you have Vasculitis That was the first thing they said i had, than Dx with Ns.The story i wrote was the short of it all. But i was at Jefferson hospital i was told i had Cnsv but than i was also told i had lymphoma. what a mess it was until my final dx.

Inflammation of the blood vessels (vasculitis), Lymph (swollen lymphs with infection caused by cancer or inflammation or infection) and CNSV (Central Nervous System Vasculitis) are all secondary problems with neurosarcoidosis.

More than 80% of sarcoidosis patients end up with their lymphs involved. The pituatary, the thyroid, the hypothalmus glands that control our hormones, body temperature, heart rhythm, etc are all in the CNS. so you can have problems with any and all of those systems and end up with it being NS.

The ACE and CRP levels that show inflammation (somewhere) in the body--are a sign that you have inflammation in your blood cells. This is vasculitis. Those red cells swell, and can block the blood vessels, and it will create a problem in whatever part of the body or brain that the vessels leads to. So if it is blocking an vessel that goes to your hand, you will have numbness or tingling or burning in your hand. If it's to your brain, and the area that is short-term memory--then you will have problems recalling what you just did a few minutes ago.

This is really as simple as it gets-- but our MD's don't know that NS causes all this--so they go about trying to find something that makes sense from what they see often and when that doesn't work-- it's back to the problem of not understanding advanced sarcoidosis.

Hope this helps,

Tracie

January 25, 2006

funny you say you have Vasculitis That was the first thing they said i had, than Dx with Ns.The story i wrote was the short of it all. But i was at Jefferson hospital i was told i had Cnsv but than i was also told i had lymphoma. what a mess it was until my final dx.

Inflammation of the blood vessels (vasculitis), Lymph (swollen lymphs with infection caused by cancer or inflammation or infection) and CNSV (Central Nervous System Vasculitis) are all secondary problems with neurosarcoidosis.

More than 80% of sarcoidosis patients end up with their lymphs involved. The pituatary, the thyroid, the hypothalmus glands that control our hormones, body temperature, heart rhythm, etc are all in the CNS. so you can have problems with any and all of those systems and end up with it being NS.

The ACE and CRP levels that show inflammation (somewhere) in the body--are a sign that you have inflammation in your blood cells. This is vasculitis. Those red cells swell, and can block the blood vessels, and it will create a problem in whatever part of the body or brain that the vessels leads to. So if it is blocking an vessel that goes to your hand, you will have numbness or tingling or burning in your hand. If it's to your brain, and the area that is short-term memory--then you will have problems recalling what you just did a few minutes ago.

This is really as simple as it gets-- but our MD's don't know that NS causes all this--so they go about trying to find something that makes sense from what they see often and when that doesn't work-- it's back to the problem of not understanding advanced sarcoidosis.

Hope this helps,

Tracie

January 25, 2006

funny you say you have Vasculitis That was the first thing they said i had, than Dx with Ns.The story i wrote was the short of it all. But i was at Jefferson hospital i was told i had Cnsv but than i was also told i had lymphoma. what a mess it was until my final dx.

Inflammation of the blood vessels (vasculitis), Lymph (swollen lymphs with infection caused by cancer or inflammation or infection) and CNSV (Central Nervous System Vasculitis) are all secondary problems with neurosarcoidosis.

More than 80% of sarcoidosis patients end up with their lymphs involved. The pituatary, the thyroid, the hypothalmus glands that control our hormones, body temperature, heart rhythm, etc are all in the CNS. so you can have problems with any and all of those systems and end up with it being NS.

The ACE and CRP levels that show inflammation (somewhere) in the body--are a sign that you have inflammation in your blood cells. This is vasculitis. Those red cells swell, and can block the blood vessels, and it will create a problem in whatever part of the body or brain that the vessels leads to. So if it is blocking an vessel that goes to your hand, you will have numbness or tingling or burning in your hand. If it's to your brain, and the area that is short-term memory--then you will have problems recalling what you just did a few minutes ago.

This is really as simple as it gets-- but our MD's don't know that NS causes all this--so they go about trying to find something that makes sense from what they see often and when that doesn't work-- it's back to the problem of not understanding advanced sarcoidosis.

Hope this helps,

Tracie

January 25, 2006