Vasculitis

[Guest guest]

Hi,

You have talked about vasculitis of the brain and I understand that

issue. But, I can't recall if you specifically talked about vasculitis

in the arms, legs etc. I have had this issue off and on since 1980

with my major attack in my lung and lymph nodes and not sure what

starts it up. I had my emergency solumedrol IV last week and you

helped me through that since I started to flare but now I have the

vasculitis in my entire body and it just totals you out which I know

everyone knows about. How have you dealt with that as doctors just do

not seem to know about it and of course it never shows up on

bloodwork. Then you just want to veg out and of course no one

understands why you are in so much pain and the scenario goes round and

round. I am not sure if I have to go up in prednisone as I just was

coming down in dosage.

Thanks for any assistance.

Hugs,

Kat

[Guest guest]

Hi,

You have talked about vasculitis of the brain and I understand that

issue. But, I can't recall if you specifically talked about vasculitis

in the arms, legs etc. I have had this issue off and on since 1980

with my major attack in my lung and lymph nodes and not sure what

starts it up. I had my emergency solumedrol IV last week and you

helped me through that since I started to flare but now I have the

vasculitis in my entire body and it just totals you out which I know

everyone knows about. How have you dealt with that as doctors just do

not seem to know about it and of course it never shows up on

bloodwork. Then you just want to veg out and of course no one

understands why you are in so much pain and the scenario goes round and

round. I am not sure if I have to go up in prednisone as I just was

coming down in dosage.

Thanks for any assistance.

Hugs,

Kat

[Guest guest]

Kat, the only way thing I've found that works for me is the MSM. Capsules or powder-- as well as making sure that I get myself so well hydrated-- at least that way my blood is in the best electroylte balance it can get into.

With you going down on the steroids-- I suspect that is playing a part in the systemic inflammation. Remember also that one of the biggest challenges is that with so much solu-medrol in your system, your adrenals aren't producing any cortisol of your own-- So you may want to try to take some calcium/magnesium supplements so that the calcium that was leached from your bones (marrow) during the IV-- is replaced. This is a huge- huge reason for that bone pain.

For me - it really seems that the pain is in large part that when all the minerals in my body have been depleted-- the pain is nuts-

I also use a Cortisol tablet ii in fact, what I will do is put together the stuff my dc has me on that has helped so much-- I really feel it's her guidance that has been most beneficial in keeping me from digressing to wear I was a couple a years ago. I'll send another post on that issue- so hang in there, it'll been done shortly.

Hugs,

Tracie

NS Co-owner/moderator

Vasculitis

Hi,You have talked about vasculitis of the brain and I understand that issue. But, I can't recall if you specifically talked about vasculitis in the arms, legs etc. I have had this issue off and on since 1980 with my major attack in my lung and lymph nodes and not sure what starts it up. I had my emergency solumedrol IV last week and you helped me through that since I started to flare but now I have the vasculitis in my entire body and it just totals you out which I know everyone knows about. How have you dealt with that as doctors just do not seem to know about it and of course it never shows up on bloodwork. Then you just want to veg out and of course no one understands why you are in so much pain and the scenario goes round and round. I am not sure if I have to go up in prednisone as I just was coming down in dosage.Thanks for any

assistance.Hugs,Kat

[Guest guest]

Kat, the only way thing I've found that works for me is the MSM. Capsules or powder-- as well as making sure that I get myself so well hydrated-- at least that way my blood is in the best electroylte balance it can get into.

With you going down on the steroids-- I suspect that is playing a part in the systemic inflammation. Remember also that one of the biggest challenges is that with so much solu-medrol in your system, your adrenals aren't producing any cortisol of your own-- So you may want to try to take some calcium/magnesium supplements so that the calcium that was leached from your bones (marrow) during the IV-- is replaced. This is a huge- huge reason for that bone pain.

For me - it really seems that the pain is in large part that when all the minerals in my body have been depleted-- the pain is nuts-

I also use a Cortisol tablet ii in fact, what I will do is put together the stuff my dc has me on that has helped so much-- I really feel it's her guidance that has been most beneficial in keeping me from digressing to wear I was a couple a years ago. I'll send another post on that issue- so hang in there, it'll been done shortly.

Hugs,

Tracie

NS Co-owner/moderator

Vasculitis

Hi,You have talked about vasculitis of the brain and I understand that issue. But, I can't recall if you specifically talked about vasculitis in the arms, legs etc. I have had this issue off and on since 1980 with my major attack in my lung and lymph nodes and not sure what starts it up. I had my emergency solumedrol IV last week and you helped me through that since I started to flare but now I have the vasculitis in my entire body and it just totals you out which I know everyone knows about. How have you dealt with that as doctors just do not seem to know about it and of course it never shows up on bloodwork. Then you just want to veg out and of course no one understands why you are in so much pain and the scenario goes round and round. I am not sure if I have to go up in prednisone as I just was coming down in dosage.Thanks for any

assistance.Hugs,Kat

[Guest guest]

Thank you Tracie. Most doctors over the last 28 yrs just look at me as if I am nuts. But my veins are actually thumping which everyone knows that has this. Your whole body feels as if it is one massive inflammation. And, it is not like you go through this for a day as it continues til it feels like stopping and of course you just want to lay down but have to go to work.

My sister brought up something but for me it appears to be seasonal where it really gets bad. I know I have gotten worse after tragic events such as someone passing away and I cannot figure out what triggers it to flare up. It has also flared up when I have had an infection, been on antibiotics in the past etc. I keep searching to figure out what does it. Last year I did not flare so much as I was on constant 1000 units of solumedrol.

Thanks for the information.

Hugs,

KatCreate a Home Theater Like the Pros. Watch the video on AOL Home.

[Guest guest]

Thank you Tracie. Most doctors over the last 28 yrs just look at me as if I am nuts. But my veins are actually thumping which everyone knows that has this. Your whole body feels as if it is one massive inflammation. And, it is not like you go through this for a day as it continues til it feels like stopping and of course you just want to lay down but have to go to work.

My sister brought up something but for me it appears to be seasonal where it really gets bad. I know I have gotten worse after tragic events such as someone passing away and I cannot figure out what triggers it to flare up. It has also flared up when I have had an infection, been on antibiotics in the past etc. I keep searching to figure out what does it. Last year I did not flare so much as I was on constant 1000 units of solumedrol.

Thanks for the information.

Hugs,

KatCreate a Home Theater Like the Pros. Watch the video on AOL Home.

[Guest guest]

Hey Kat.. I've noticed that I get sick every year in early Spring.. just about this time of year also.. don't know if its just coiencidence (SP) or not.. but my son has noticed this as well.. I usually end up in the hospital, or at least the ER several times during this period of time..

And I definately know what u mean by your veins thumping.. good description for it.. may not have anything to do with sarc.. but I was diagnosised with vasculitis long before I was dx with NS.. the "geniuses" that I'm dealing with now haven't realized it yet..

Makes me mad, and scared at the same time.. CALGON, TAKE ME AWAY! ha

Hugs,

Re: Vasculitis

Thank you Tracie. Most doctors over the last 28 yrs just look at me as if I am nuts. But my veins are actually thumping which everyone knows that has this. Your whole body feels as if it is one massive inflammation. And, it is not like you go through this for a day as it continues til it feels like stopping and of course you just want to lay down but have to go to work.

My sister brought up something but for me it appears to be seasonal where it really gets bad. I know I have gotten worse after tragic events such as someone passing away and I cannot figure out what triggers it to flare up. It has also flared up when I have had an infection, been on antibiotics in the past etc. I keep searching to figure out what does it. Last year I did not flare so much as I was on constant 1000 units of solumedrol.

Thanks for the information.

Hugs,

Kat

Create a Home Theater Like the Pros. Watch the video on AOL Home.

No virus found in this incoming message.Checked by AVG. Version: 7.5.519 / Virus Database: 269.21.7/1334 - Release Date: 3/18/2008 8:52 PM

[Guest guest]

Hey Kat.. I've noticed that I get sick every year in early Spring.. just about this time of year also.. don't know if its just coiencidence (SP) or not.. but my son has noticed this as well.. I usually end up in the hospital, or at least the ER several times during this period of time..

And I definately know what u mean by your veins thumping.. good description for it.. may not have anything to do with sarc.. but I was diagnosised with vasculitis long before I was dx with NS.. the "geniuses" that I'm dealing with now haven't realized it yet..

Makes me mad, and scared at the same time.. CALGON, TAKE ME AWAY! ha

Hugs,

Re: Vasculitis

Thank you Tracie. Most doctors over the last 28 yrs just look at me as if I am nuts. But my veins are actually thumping which everyone knows that has this. Your whole body feels as if it is one massive inflammation. And, it is not like you go through this for a day as it continues til it feels like stopping and of course you just want to lay down but have to go to work.

My sister brought up something but for me it appears to be seasonal where it really gets bad. I know I have gotten worse after tragic events such as someone passing away and I cannot figure out what triggers it to flare up. It has also flared up when I have had an infection, been on antibiotics in the past etc. I keep searching to figure out what does it. Last year I did not flare so much as I was on constant 1000 units of solumedrol.

Thanks for the information.

Hugs,

Kat

Create a Home Theater Like the Pros. Watch the video on AOL Home.

No virus found in this incoming message.Checked by AVG. Version: 7.5.519 / Virus Database: 269.21.7/1334 - Release Date: 3/18/2008 8:52 PM

[Guest guest]

Thank you . I have been having this for close to 30 yrs and everyone does not know what I am talking about but it literally takes me out if you know what I mean as it gets so intense.

KatCreate a Home Theater Like the Pros. Watch the video on AOL Home.

[Guest guest]

Thank you . I have been having this for close to 30 yrs and everyone does not know what I am talking about but it literally takes me out if you know what I mean as it gets so intense.

KatCreate a Home Theater Like the Pros. Watch the video on AOL Home.