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pmac
Regular Member


Date Joined May 2005
Total Posts : 221
   Posted 3/28/2008 9:52 AM (GMT -7)   
Hello there,
 
I'm usually on the UC page...but I find myself facing a new "fun" thing with my body!  Since Dec. I've had really bad swollen purple painful toes, was referred to a derm. and she simply told me I have chilblains and they were from my feet being cold.  She sent me for a Cryglobulin test as well, but made no fuss over it, therefore I wasn't the least bit concerned...all I had to do now was keep my feet warm (silly but simple!)  3 weeks later I got a call that she wanted me to go for more bloodwork because my cryoglobulin test came back positive...of course the person who called me had no idea what that meant!  She sent me for a ANA, and after seeing her on Tuesday I've found out that too is positive!  So she has now done a biopsy of my worst affected toe...and I have to wait 2 weeks confused
when I asked her what it was we were hoping for from the results, she replied Lupus because it was easy to treat!?  I already have IBD...now maybe this...or what!?  Of course you always have to get on the computer and Google things...could be anything from Lupus-Cancer....and I'm trying really hard not to think about it and freak out!  Has anyone else here dealt with this...or lucky enough to have more than one autoimmune disease?  Any help/feedback would be soooo appreciated.
 
Thanks for listening :-)
Paula

TiBoBi
Regular Member


Date Joined Mar 2008
Total Posts : 89
   Posted 3/28/2008 10:37 AM (GMT -7)   
Hi Paula,


I looked up "cryoglobulin" and found this site:

Cryoglobulin Test

At least it gives you a bit of info on the lab test..more than you got from

the nitwit nurse. LOL.



Hope everything turns out okay.



Ti

<Edited link so page isn't so wide.>

Post Edited By Moderator (Lynnwood) : 3/28/2008 4:58:12 PM (GMT-6)


Jenny S.
Regular Member


Date Joined Oct 2007
Total Posts : 80
   Posted 3/28/2008 10:50 AM (GMT -7)   
Paula,

I have Raynaud's - discoloration in hands/feet from lack of blood circulation. My hands are worse, but the same thing can happen to your feet. I was later on diagnosed with Lupus --- kind of a natural progression. Hope this helps.

Jenny


~Jenny~

I have Lupus ... Lupus doesn't have me. 

Dx: Raynaud's(2000)·Lupus(2001)

Rx: Pletal 100mg·Norvasc 10mg·Prednisone 5mg·Plaquenil 400mg

  


Chaya
Regular Member


Date Joined Mar 2007
Total Posts : 194
   Posted 3/28/2008 11:17 AM (GMT -7)   
Hi Pmac I have Crohn's and Lupus along with IC so yes it happens

lion00
Regular Member


Date Joined Aug 2006
Total Posts : 334
   Posted 3/28/2008 4:29 PM (GMT -7)   

Hi Pmac,

If you do a google search for cple (chilblain pattern lupus ) or chilblain lupus there will be some info there. I was diagnosed with this after having a biopsy done. It is quite hard to treat as conventional treatments tend to not work as well with cple. Having said that, some forms of cple remain relatively minor. A lot stay as simply skin problems, some have joint probs too. It can progress to systemic lupus in some cases but once diagnosed they would do regular checks and spot any problems early. This is a pretty rare form of lupus, when i first joined i asked about it and no one had this form. Not sure if any new members have or not? If there are any specific questions about cple, symptoms,treatments etc please ask away.


CPLE, probable SLE, Steroid Induced Diabetes, proctal fugax, anismus, slow transit constipation.
Prednisoloe, 30mg
Tramadol
Naproxin
Glicazide 80mg x 4 daily (for diabetes)
 


pmac
Regular Member


Date Joined May 2005
Total Posts : 221
   Posted 3/29/2008 6:12 PM (GMT -7)   

Thanks lion!  I know that I shouldn't be worrying so much, and just try to calm my mind until I know the biopsy results, and then try to deal with whatever it is that is going on with me.  Sometimes you just need to vent and let it out!  It's really hard trying to supress fear over the unknown...I'm trying to not let anyone know how scared I am having all of these things wrong with me...I'm only 31 and haven't been married a year yet...I keep thinking of what the years ahead have in store for us, and wether he'll be able to handle it or be enough support if I get any sicker...god I hate feeling sorry for myself, and i really don;t want anyone to feel sorry for me!!!  I was just starting to feel like I had a handle of my UC and looking ahead to hopefully feeling well for a really long time, maybe try having a family, and now this has been thrown at me devil Anyway I'm ranting...just need to let this out I guess sad    Thanks for listening, I'll google cple...thanks.  If I have any questions i'll be sure to ask.

Thanks again!


lion00
Regular Member


Date Joined Aug 2006
Total Posts : 334
   Posted 3/31/2008 11:24 AM (GMT -7)   
Hi Pmac,
Most of the time the worry and not knowing is worse than anything else. I'm only 33 so I know exactly how you feel. But things are never as bad as they first seem. Hang in till you get the results of your biopsy. Take care x
CPLE, probable SLE, Steroid Induced Diabetes, proctal fugax, anismus, slow transit constipation.
Prednisoloe, 30mg
Tramadol
Naproxin
Glicazide 80mg x 4 daily (for diabetes)
 


pmac
Regular Member


Date Joined May 2005
Total Posts : 221
   Posted 3/31/2008 3:30 PM (GMT -7)   
Thanks so much ...I really appreciate the support. You're right things are never as bad as they first seem, and there is always someone who has it worse...I just keep reminding myself :)

Until next tuesday....

Paula
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