Re: nawitch

[Guest guest]

In a message dated 4/11/02 1:31:40 AM Pacific Daylight Time, writes:

Message: 1

Date: Wed, 10 Apr 2002 23:24:05 -0000

From: "morgannawitch33" <morgannawitch33@...>

Subject: I have vasculitis of my liver and brain

I just found out and I feel all alone! I must start Cemo next friday and I have no-one to talk to. my Husband is very supportive but he don't understand what im going threw. Even know he's going threw it to.

ANyone who would be willing to chat email me at morgannawitch33@...

Were you diagnosed as having AIH? There are lots of people here to talk with. Welcome to the group.

[Guest guest]

I was dx with autoimmune hepititis about 2 months ago, and inflamation in the brain and nerves in the brain, 2 days ago the DR told me I Dx with Vasculitis and I was on prednizone for about 3yrs off and on and he said my next option is Chemo, and most people dont' live more than 6 months. He told me This is a complication of lupus. so im a very complicated case. anyone has any help please leave me know

flatcat9@... wrote: In a message dated 4/11/02 1:31:40 AM Pacific Daylight Time, writes:

Message: 1 Date: Wed, 10 Apr 2002 23:24:05 -0000 From: "morgannawitch33" <morgannawitch33@...> Subject: I have vasculitis of my liver and brain I just found out and I feel all alone! I must start Cemo next friday and I have no-one to talk to. my Husband is very supportive but he don't understand what im going threw. Even know he's going threw it to. ANyone who would be willing to chat email me at morgannawitch33@...Were you diagnosed as having AIH? There are lots of people here to talk with. Welcome to the group.

[Guest guest]

In a message dated 4/11/02 2:33:56 PM Pacific Daylight Time, writes:

I was dx with autoimmune hepititis about 2 months ago, and inflamation in the brain and nerves in the brain, 2 days ago the DR told me I Dx with Vasculitis and I was on prednizone for about 3yrs off and on and he said my next option is Chemo, and most people dont' live more than 6 months. He told me This is a complication of lupus. so im a very complicated case. anyone has any help please leave me know

nawitch, I'm so sorry you are having to deal with this. If the situation is this serious, perhaps you should get a second opinion or have a consultation. Please keep in touch.

[Guest guest]

nawitch:

I'm so sorry to hear about your diagnosis. If you don't mind my

asking, what symptoms did you experience to make them expect this?

Bless your heart, if there is anything I can do to help, please let

me know. I'll keep you in my prayers.

Sincerely,

Rhonda

> In a message dated 4/11/02 2:33:56 PM Pacific Daylight Time,

> @y... writes:

>

>

> > I was dx with autoimmune hepititis about 2 months ago, and

inflamation in

> > the brain and nerves in the brain, 2 days ago the DR told me I

Dx with

> > Vasculitis and I was on prednizone for about 3yrs off and on and

he said my

> > next option is Chemo, and most people dont' live more than 6

months. He

> > told me This is a complication of lupus. so im a very

complicated case.

> >

>

> nawitch, I'm so sorry you are having to deal with this. If

the

> situation is this serious, perhaps you should get a second opinion

or have a

> consultation. Please keep in touch.

[Guest guest]

Rhonda,

for about 3ys I have had daily sever headaches, needing daily shots of demoral. I have been in the hospital countless times for sever high blood pressure and heart rate of about 178bpm. Red all over my body, I have a Adreanl tumor and the Drs thougt that was my problem that i had a Pheo tumor., but the blood work came back ok.

finally my liver looked bad on a cat-scan, and my liver eymzems were4times the normal limit. and contiuned to rise. So the Gi Dr did liver Biosphy, showed AIH. and lots of inflamation.The Neru dr did a Mri/angiogram and showed inflamation in the nerves in my brain. So thats where all the headaches were comming from.

The steriods have been doing nothing over the past three yrs and im only gotten worse. So the Remot.Dr said my only chance for help at this point is Chemo. That I developed a complication called Vasculitis, and most people don't live much past 6 months and he did referr me to ITs to hopkins in Baltimore pa to see the dr three. since he said its affecting 2Major organs now.

so thank you for your support.

na

savedbybunnies <rbsteff@...> wrote: nawitch:I'm so sorry to hear about your diagnosis. If you don't mind my asking, what symptoms did you experience to make them expect this? Bless your heart, if there is anything I can do to help, please let me know. I'll keep you in my prayers.Sincerely,Rhonda> In a message dated 4/11/02 2:33:56 PM Pacific Daylight Time, > @y... writes:> > > > I was dx with autoimmune hepititis about 2 months ago, and inflamation in > > the brain and nerves in the brain, 2 days ago the DR told me I Dx with > > Vasculitis and I was on prednizone for about 3yrs off and on and he said my > > next option is Chemo, and most people dont' live more than 6 months. He > > told me This is a complication of lupus. so im a very complicated case. > > > > nawitch, I'm so sorry you are having to deal with this. If the > situation is this serious, perhaps you should get a second opinion or have a > consultation. Please keep in touch.

[Guest guest]

Rhonda, Bless you, you have been through a lot! I hope they find the culprit(s) soon and irradicate them!

Patty

-----Original Message-----From: myers [mailto:morgannawitch33@...]Sent: Friday, April 12, 2002 8:29 AM Subject: Re: [ ] Re: nawitch

Rhonda, for about 3ys I have had daily sever headaches, needing daily shots of demoral. I have been in the hospital countless times for sever high blood pressure and heart rate of about 178bpm. Red all over my body, I have a Adreanl tumor and the Drs thougt that was my problem that i had a Pheo tumor., but the blood work came back ok. finally my liver looked bad on a cat-scan, and my liver eymzems were4times the normal limit. and contiuned to rise. So the Gi Dr did liver Biosphy, showed AIH. and lots of inflamation.The Neru dr did a Mri/angiogram and showed inflamation in the nerves in my brain. So thats where all the headaches were comming from. The steriods have been doing nothing over the past three yrs and im only gotten worse. So the Remot.Dr said my only chance for help at this point is Chemo. That I developed a complication called Vasculitis, and most people don't live much past 6 months and he did referr me to ITs to hopkins in Baltimore pa to see the dr three. since he said its affecting 2Major organs now. so thank you for your support. na savedbybunnies <rbsteff@...> wrote: nawitch:I'm so sorry to hear about your diagnosis. If you don't mind my asking, what symptoms did you experience to make them expect this? Bless your heart, if there is anything I can do to help, please let me know. I'll keep you in my prayers.Sincerely,Rhonda> In a message dated 4/11/02 2:33:56 PM Pacific Daylight Time, > @y... writes:> > > > I was dx with autoimmune hepititis about 2 months ago, and inflamation in > > the brain and nerves in the brain, 2 days ago the DR told me I Dx with > > Vasculitis and I was on prednizone for about 3yrs off and on and he said my > > next option is Chemo, and most people dont' live more than 6 months. He > > told me This is a complication of lupus. so im a very complicated case. > > > > nawitch, I'm so sorry you are having to deal with this. If the > situation is this serious, perhaps you should get a second opinion or have a > consultation. Please keep in touch.

[Guest guest]

nawitch:

I hope dr. no.3 can do the trick for you. Is surgery not an option?

I don't mean to sound uneducated,but the fact is...I am when it

comes to this. I have learned more in the past few days since

joining this group than I have in the past six months since all this

started.

I had a braintumor removed 13 years ago by a physician that is now

located in Seattle. His name is Dr. Wyler. I'm not sure if he is

specifically an epileptic surgion or what but he is world reknown

for brain surgery.

God really does work in mysterious ways. Keep your spirit up and

know your in our prayers.

Rhonda

> > In a message dated 4/11/02 2:33:56 PM Pacific Daylight Time,

> > @y... writes:

> >

> >

> > > I was dx with autoimmune hepititis about 2 months ago, and

> inflamation in

> > > the brain and nerves in the brain, 2 days ago the DR told

me I

> Dx with

> > > Vasculitis and I was on prednizone for about 3yrs off and

on and

> he said my

> > > next option is Chemo, and most people dont' live more than

6

> months. He

> > > told me This is a complication of lupus. so im a very

> complicated case.

> > >

> >

> > nawitch, I'm so sorry you are having to deal with

this. If

> the

> > situation is this serious, perhaps you should get a second

opinion

> or have a

> > consultation. Please keep in touch.

>

>

>

>

[Guest guest]

nawitch, I wish I had some magic answer. I hope you have people with you who can help you through these difficulties.

Harper

[Guest guest]

Harper,

thank you for your kindness

flatcat9@... wrote: nawitch, I wish I had some magic answer. I hope you have people with you who can help you through these difficulties. Harper

[Guest guest]

Hi...

Don't know your name..sorry...but I have seen a couple of posts from you...You sound very scared and I just wanted to jump in here and let you know that there are many here that have many different auto-immune diseases and so the more you read the more you will learn here...

I am a mom here ...it is my son who is now 19 who has the auto-immune problems...he has many ...has been sick since he was 9...he also has been diagnosed with vasculitis...that was about 4-5 yrs ago...it effects his legs,arms, and face...so far not his torso...he rashes and swells...he would get this very rarely...back in 92 ...before anything else was diagnosed...but would always go away after a few days and benadryl..so it was being treated as an allergy....but then in 93 it came back with a vengence...make it so walking was very painful...he was already diagnosed with Crohns and RA...his RA doctor then starting trying all kinds of things to help this....steriod pulses...which meant going to the hosp to get and IV pulse...1 gram...equal to 1000 mg of pred...he worked for the first couple of months...got one every month...but then it started coming back sooner and sooner ...until it only lasted a couple of days...then he got so bad that he could not walk...couldn't stand the feel of clothing...everything was painful...they tried many other meds...one of them being a cancer med...chemo med....that did not help either...

then after 8 months of this they tried cyclosporine...which is a med given usually after tx...well it worked....so he has been on that for 4 or so yrs...they have tried lowering the dose and the rash comes back...so he still is on the higher dose...lately the rash is coming back alot and now the swelling at night mainly...so not sure what is going to happen next...

Sorry I could not be of much help though...

hope to see more from you

Luanne Ty's mom