Re: Carol/Diagnosis/Questions

December 13, 2004

Trudy: yeah for you. Now you can start working on getting better. Go to our

patient support web site css-association.org and read. There is alots of

support there. I had six months of IV cytoxan. No side effects other than

one day of mild nausea. No hair loss - nothing. I can call you later. I am

out of town for a week. Also - write Janeonlne@...- she is the co

director of the CSS group. Carol

Carol/Diagnosis/Questions

>

> Hi all. Been away for a few weeks and wanted to check in and see how

> everyone is doing. I haven't had access to a computer and it would

> take days to read the mail. I will try to catch up if I can though

> cuz I hate to miss posts. Hope this season is finding you all healthy

> and happy and ready for a new year. I went to the specialist in Ann

> Arbor and yes...I definately have Churg-Strauss Vasculitis says he. I

> will be seeing a neuro-surgeon this week for a biopsy but he said he

> doesn't need it to diagnose the CSV as my labs show elevated

> eosinophils, elevated sed rate, elevate ANA's, failed the FEV even

> with loads of meds, have chronic polyposis, skin is burning, and high

> dose prednisone is not working. So, next step is a round of meds that

> have a little better kick than the coticosteroids. One of my

> questions is has anyone else went through the low dose chemo-therapy

> for this disorder? Did you have side effects? How long did you take

> meds? (He says 6 months to a year). Were you warned about possibility

> of stroke? Did your CSV go into remission? Are your other organs

> involved? (He says my lungs and brain so far). I have been reading as

> much as I can and am at a place where I am worried and relieved...if

> that makes sense. I have been pretty sick for a long time with no

> answers and knew something besides fibromyalgia was wrong. Had I

> believed the rheumatologist and never kept questioning this, it

> scares me to think what could have happened without treatment

> options. Anyone with any info let me know what you can to enlighten

> me okay? Thanks all and make a good day! Trudy.

>

December 14, 2004

Hi Trudy,

It's good to hear from you as I was wondering where you were and a bit worried. I'm sorry to hear that you have extra health issues and wish you the very best of luck whith the medication. I'm afraid I don't have any relevant info to enlighten you, so I hope someone else does. Glad to have you back! :-)

Becky x

Trudy <iamthezookeeper@...> wrote:

Hi all. Been away for a few weeks and wanted to check in and see how everyone is doing. I haven't had access to a computer and it would take days to read the mail. I will try to catch up if I can though cuz I hate to miss posts. Hope this season is finding you all healthy and happy and ready for a new year. I went to the specialist in Ann Arbor and yes...I definately have Churg-Strauss Vasculitis says he. I will be seeing a neuro-surgeon this week for a biopsy but he said he doesn't need it to diagnose the CSV as my labs show elevated eosinophils, elevated sed rate, elevate ANA's, failed the FEV even with loads of meds, have chronic polyposis, skin is burning, and high dose prednisone is not working. So, next step is a round of meds that have a little better kick than the coticosteroids. One of my questions is has anyone else

went through the low dose chemo-therapy for this disorder? Did you have side effects? How long did you take meds? (He says 6 months to a year). Were you warned about possibility of stroke? Did your CSV go into remission? Are your other organs involved? (He says my lungs and brain so far). I have been reading as much as I can and am at a place where I am worried and relieved...if that makes sense. I have been pretty sick for a long time with no answers and knew something besides fibromyalgia was wrong. Had I believed the rheumatologist and never kept questioning this, it scares me to think what could have happened without treatment options. Anyone with any info let me know what you can to enlighten me okay? Thanks all and make a good day! Trudy.

Win a castle for NYE with your mates and Messenger

December 15, 2004

> Hi Trudy,

>

> It's good to hear from you as I was wondering where you were and a

bit worried.

Thank you for the welcome back Becky. I am going to try to keep up

from now on but computer time is at a minimum here. I keep waking up

at 4:30 AM so that is good...kind of...in that I can get online with

no problems. I hope everyone is doing well and happy right now. Trudy.

December 18, 2004

Trudy: It seems like a good idea if your current rheumatologist could send

his notes tothe first doc to kind of let him know what he missed. ( in a

nice way)---- Carol- Original Message -----

From: " Trudy " <iamthezookeeper@...>

Sent: Monday, December 13, 2004 3:40 AM

Subject: Carol/Diagnosis/Questions