New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

momofltlbrat
Regular Member


Date Joined Apr 2007
Total Posts : 164
   Posted 4/1/2008 11:45 AM (GMT -6)   
Hey everybody,
 
Just got home from appt with nephrologist.  Due to the results of the urinalysis, he did an ultrasound of the kidneys.  He found lesions so he is sending me for a kidney biopsy which will or will not dx me with polyangitis.  This is a form of vasculitis that can effect the kidneys and lungs.  If I do have it he assures me we found it early.  It is treated with a low dose of cytoxin (chemo drug).  This shouldn't cause me to be sick, I may lose some hair.  Long term, this disease can destroy the kidney.  I asked what the connection could be to MS and/or lupus, he told me when the results come back he will discuss with my neuro and rhemy and hopefully come up with a definitive dx.  He said the vasulitis proves I have an autoimmune disease, which can be dx with MS as well.  We have to wait and see, or rather I have to wait and see.  As for the rash I have, he feels some may be vasculitis, but most of it is from an unknown cause.  I'll keep everyone posted, thanks for being here for me.
 
I don't know, but Mystery Diagnosis is sounding better and better.  But if noone else has givien me a definitive dx, could they?
 
Debbie

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 4/1/2008 1:32 PM (GMT -6)   
Hey Debbie

O gosh...It seems u'r getting some place, and i'm so glad, but i'm very concerned about this. How long did he feel u'd be waiting for an answer?? I'm so glad the predicted med won't cause u to be sick, but i truely hope u don't have to take it. Will the treatment act in the same way as the ms treatments...slow progression...or somehow cure this??? I'm sorry...i don't know anything about this and haven't researched...but i will. Take good care and please do let us know what's happening and how u'r doing friend.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


momofltlbrat
Regular Member


Date Joined Apr 2007
Total Posts : 164
   Posted 4/1/2008 2:14 PM (GMT -6)   
Hey Rhonda,
 
The drug even though it used for chemo is given in a much lower dosage.  I shouldn't be sick, but might lose some hair.  The form of vasculitis they are looking for is microscopic polyangitis which results from blood vessel inflammation, which can cause the vessel to weaken, or narrow so that it may close off the vessel.  Then the organ involved becomes damaged from loss of oxygen supplied by the blood.  The cytoxan is given to hopefully stop the damage (remission).  Then the meds get changed a little bit, I'll get monitoring and hopefully it won't flare again.  If the cytoxan doesn't put it in remission, worse case scenario is the kidney is destroyed from lack of blood/oxygen.
 
I'm trying to be positive, per the ultrasound the doc did, he thinks we caught this at the beginning.  I have to wait for the hospital to call and schedule the biopsy and they I follow up with the doc 1-2 weeks after.
 
Thanks for being here for me.  Hope this helps you and everyone else understand.
 
Debbie

mystery reader
Regular Member


Date Joined Jun 2007
Total Posts : 257
   Posted 4/1/2008 2:46 PM (GMT -6)   
Debbie, I am sorry you are going through this. It's great that you are staying positive and it sounds like you doctor is on top of things. Hopefully your biopsy will come back negative.
Barb/mystery reader
Diagnosed April 2007
Started tysabri -- December 2007


Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 4/1/2008 3:05 PM (GMT -6)   

Hi Debbie,

 

I’m so sorry you’re dealing with this, and hope the hospital can fit you in for that biopsy really soon. This sounds like some potentially serious stuff, and I’m really glad that your doc thinks that it was caught early. I think low dose cytoxan is also occasionally used in MS, and I’m wondering if it is also used in other autoimmune disease as well. I really hope that this latest round of tests and appts will lead you to the correct dx or dxes, including some answers and relief for that rash. Please keep us updated, and know that we are all here to support you. Hang in there!

 

Sunny


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3523
   Posted 4/1/2008 5:47 PM (GMT -6)   

Wow Deb,

This is so disappointing!!  I am so sorry.  I am so hoping you get some relief soon.  I am keeping you in my thoughts and prayers.  Hang in there and let us know how you are doing and what the doctors say. 

Love and prayers,


Gretchen       co-moderator MS board       diagnosed with MS July 2006


Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 4/1/2008 5:55 PM (GMT -6)   
Hi Debbie,
I want you to know you are in my thoughts and prayers. I am hoping that everything works out for the best for you. Hang in there girl. Everything will work out i'm sure.
Love
Lynn
Dx MS Dec 06, Started Tysabri March 2008, Baclofen, Cymbalta


momofltlbrat
Regular Member


Date Joined Apr 2007
Total Posts : 164
   Posted 4/2/2008 8:14 AM (GMT -6)   
Hey everybody,
 
Thanks for all your thoughts, prayers and kind words.  I feel a little better today.  I was in a funk knowing that long term this could destroy my kidneys.  I need to remember, for now, that he said he thinks we caught it early, which can only mean we have hope for now.
 
Love you all
Debbie

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 4/2/2008 6:28 PM (GMT -6)   
Hey Debbie!

Wow...i'm so glad u'r feeling better today!! U'r absolutely right...keep that hope and just lean on that for now. Don't dread what may not happen...as hard as that is! U are so strong and so able to get thru this...just hang on and lean on u'r friends here...we aren't going anywhere. Take good care of u and the little brats and know we are all thinking of u and care very much how u are.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, August 20, 2017 7:31 AM (GMT -6)
There are a total of 2,857,679 posts in 313,539 threads.
View Active Threads


Who's Online
This forum has 155147 registered members. Please welcome our newest member, ejacobs176.
371 Guest(s), 6 Registered Member(s) are currently online.  Details
anotherucguy, alunke82, Scott007, cr3ativegirl, RobLee, Leecarol


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer