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kncb95
Regular Member


Date Joined Jun 2007
Total Posts : 40
   Posted 6/7/2007 3:10 PM (GMT -7)   
First off thanks to everyone who responded to my previous post.
Second I need a smiley face pulling his hair out!! sad
I went to the Rheum today to get my lab results. This was the first time in over a year I had them drawn. A year ago my labs were:
 
ANA- pos.- 1:1280
ENA RNP - 54                           range:<20
ENA SSA - 123                         range:<20
ENA SSB - 41                           range:<20
During this time I felt bad tired all the time no matter how much sleep, very weak, and if I got a paper cut it would get infected and take weeks to heal.
 
OK today I feel worse than I did 1 year ago and my labs were:
 
ANA-neg.
ENA RNP - 21   (but this Rheumo range was 0-99)
ENA SSA - 8
ENA SSB - 2
and the only thing low was my vitamin D level.
Am I crazy. I asked so does this mean I no longer have sjogren's and MCTD. Her answer was autoimmune diseases are always changing. WHAT? what does that mean. Is this all in my head. If not why do I feel so bad? Please someone give me advice.
Thanks,
Kasey
 
Kasey (kncb95)
Dx: Mixed connective tissue disease '06, sjogren's '06,  GERD '05, insulin resistance '01, ADHD '01, major depression '98, polycystic ovarian syndrome '97
Adderal and lots and lots of vitamins
 


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 6/7/2007 4:26 PM (GMT -7)   

Hi Kasey(((hugs))), I know you are frustrated. While this is all fairly new to me I do know that it is not unusual for your labs to be all over the place. My ANA continues to be 1:2560 and sometimes I feel like crap and sometimes I don't. My sed rate is up and down. Depending on flares. I know several people here have had both poss and neg ana's. Plus you can have +ana and not have lupus. It's like your doctor said it's can go all over the place. You can also go into remission. However if you are feeling yucky than I doubt that is the case. I hope that the doctor will at least give you meds to deal with the symptoms and you start feeling better.

Hang in there

hugs

carol


God Bless
Carol
 
 Newly DX's Lupus.Possible CREST,COPD, high PB xanax,triam , vicodin.5x3, Evista for osteo,. oxygen Plaquanil800mil, . effexor. spiriva, xopenex. pred.10.mil.
 
Come ye, all that are weary and heavy laden, and I will give you rest!
 
 


kncb95
Regular Member


Date Joined Jun 2007
Total Posts : 40
   Posted 6/7/2007 5:06 PM (GMT -7)   
Thanks Carol My Rheum is giving me Mobic for anti inflammitory and trazadone to help me get good sleep and help with aches and pains and a rx strength vitamin D. I am a little less frustrated now that I have thought about it a little while longer. I guess I am very lucky that I did not have to wait years before getting my first diagoses. My mom has a friend that it was 2 years before she finally had a definitive answer.

Thanks again,
Kasey
Kasey (kncb95)
Dx: Mixed connective tissue disease '06, sjogren's '06,  GERD '05, insulin resistance '01, ADHD '01, major depression '98, polycystic ovarian syndrome '97
Adderal and lots and lots of vitamins
 


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 6/7/2007 5:28 PM (GMT -7)   
Hi Kasey,
   ((Hugs)) Your not crazy! Sometimes labs will bounce around. Last year when your labs were all elevated, did the doc put you on meds then?
   My ANA stays at 1:640 unless i'm in a terrible flare. My sed rate stays between 30-60 normally. My last Anti-SSA was 1051 and the Anti-SSB was 391 and I'm feeling pretty darn good, I have to say... :-) . There have been times when I felt sooo bad and my labs were better than they are now....It's strange!
   I did notice when I had lung problems, seizures/CNS problems, some of the labs that are normal now where out of whack then.
   I hope you get some answers and relief soon. Hang in there and keep us updated. You will be in my thoughts and prayers.
                                                                  Babs
 
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
Meds:Arava,plavix,aspirin,protonix,gabitril,zanaflex,xanax,
mirapex,advair,foxamax,donnatal,folic acid.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


kncb95
Regular Member


Date Joined Jun 2007
Total Posts : 40
   Posted 6/7/2007 5:39 PM (GMT -7)   
Hi Babs,
All they gave me a year ago was a low dose of steriods. The low dose was because I was persistant about not taking steriods and the low dose was a compromise. It did help a little.

Thanks,
Kasey
Kasey (kncb95)
Dx: Mixed connective tissue disease '06, sjogren's '06,  GERD '05, insulin resistance '01, ADHD '01, major depression '98, polycystic ovarian syndrome '97
Adderal and lots and lots of vitamins
 


omega
Veteran Member


Date Joined Jan 2007
Total Posts : 607
   Posted 6/7/2007 6:13 PM (GMT -7)   
Agree with all others. You are not crazy. And the autoimm. does change around. From your recent lab test, you look like you are having a flare right now. HOpe u feel better soon

dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 6/7/2007 6:46 PM (GMT -7)   
I agree with the frustration of the labs and them not matching up with how you feel. I'm not quite sure what she meant be autoimmune diseases are always changing. I asked my doctor one day jokingly, so if all my labs come back okay the next time does that mean I'm cured? He just shook his head and smirked and said, you know better than that. Oh well, so much for hoping.

I have also heard that the meds that you take can make your labs look good too so it may just be that your meds are doing it. I hope she is continuing to treat you???
"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin 2mg/day (tapering to PRN), Miralax 17g, Supplements


http://www.healingwell.com/donate


kncb95
Regular Member


Date Joined Jun 2007
Total Posts : 40
   Posted 6/7/2007 7:32 PM (GMT -7)   
Yes she is continueing to treat me. She actually was very surprised by the labs. She wants to redraw them in 4 weeks but a differant lab.
Kasey (kncb95)
Dx: Mixed connective tissue disease '06, sjogren's '06,  GERD '05, insulin resistance '01, ADHD '01, major depression '98, polycystic ovarian syndrome '97
Adderal and lots and lots of vitamins
 


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 6/7/2007 8:21 PM (GMT -7)   
That's good... my docs use Quest or LabCorp and they never match. I'm glad she is still treating you, I was a little worried there. :-)
"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin 2mg/day (tapering to PRN), Miralax 17g, Supplements


http://www.healingwell.com/donate

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