question about diagnosis

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Jaynurse05
New Member


Date Joined Feb 2009
Total Posts : 3
   Posted 2/15/2009 12:24 AM (GMT -7)   
Hello all - I am in the process of being worked up for a bunch of problems which include numbness and tingling in my hands and feet, bladder hesitancy/retention, pitting edema, severe fatigue to mention a few.  I have had a few labs done and being a nurse I was a bad girl and looked at my results before my appointment with my neurologist.  nono To my defense, I have been "work up" for something most of my life and nothing significant has ever come back abnormal.  Well this time some have come back positive and now has me a little baffeled.  Maybe someone can help me? 
ANA by ELISA: detected
ANA by IFA was 1:40 which is a negative titer according to this lab.
Double stranded DNA was 1:160, postive is >1:10
Acetylcholine receptor binding and modulating were increased and blocking was    negative.
Sed rate was normal at this time... have had three elevated sed rates in past.
Serum electrophoresis showed slight elevated polyclonal gamma globulin, whatever the heck that means???
MRI of head and back was normal.
All other results at this time are within normal limits. 
My question is what is the difference/significance between the two ANA tests and thier different results?  And if I have a negative ana but a positive DS DNA, what does that mean in regards to lupus?  Also, what's up with the acetylcholine test?  Do i have myasthenia gravis on top of all this fun? Any help would be greatly appreciated.  I knew I should not have looked, now i am even more stressed then before. Ignorance really is bliss sometimes.
PS - I am new to this posting thing... so please bare with me if I make some terrible taboo.  Thanks! smilewinkgrin

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 2/15/2009 2:12 PM (GMT -7)   
Hi Jaynurse,

It is GREAT to know and file all your lab results. Sometimes, it requires some great detective work to track down autoimmune issues. These diseases can play hide and seek and act like other diseases. You might consider keeping all your lab results . . . normal or not . . . and highlight the abnormal ones so you can identify them quickly.

It might be helpful to a doctor at some point to see how things change over a period of time.

It really IS scary at first to see those numbers pop out at you. But it allows you to help figure out what is going wrong with your body. I'm not much help with the labs, as its all I can do to understand the combination of issues that affect me . . . but others here may be able to help.

You probably have symptoms that you never thought were significant. After I started posting and reading, I realized that I had some symptoms, which I previously thought were normal for everyone. Its funny what we learn to live with. Anyway, keeping a symptoms diary can be very helpful to your doctor.

Welcome to the forum!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 2/15/2009 3:21 PM (GMT -7)   
I have been testing positive for double standed DNA [ds-DNA] antibodies for three years. In the beginning my ANA was negative but is now positive. Your lab results are going to get the doctor's attention. At the very least you likely have some autoimmune process happening. Having high sed rates in the past fits in with the inflammatory process of autoimmune issues.

I have peripheral neuropathy not from lupus but from Crohn's disease, another autoimmune disease. Have you had an EMG/NCS yet to determine if you have nerve degeneration?

Hopefully your neurologist will get you set up with a great rheumatologist. A rheumy is really the best at sorting out the autoimmune issues.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


Jaynurse05
New Member


Date Joined Feb 2009
Total Posts : 3
   Posted 2/15/2009 9:04 PM (GMT -7)   
Thank you AlwaysRosie and Ides for your comments. Rosie: Yes, I have been seeing a lot of symptoms that I am now connecting to possible autoimmune problems. I don't want to say I have lupus as yet, mostly because I have been sure I had something in the past and ended up not having it. I am sure that probabily sounds familiar around here though. As for keeping labs, I received a copy of my labs for the past two years and have highlighted the abdnormal values on them. Also have a list of symptoms ready for the doc whenever they want to see them. Ides: You say that you that you tested negative for ana but positive for DS DNA? Did they diagnose you at the time with Lupus or did you have to wait until your ana turned positive? By the way, no I have not had an EMG/NCS done yet. My neurologist said that depending on the the labs and MRIs, that would be the next step. By the way do, they do that in the office or is it another test you have to schedule and wait for? I am SOOOO sick of waiting. I am not used to be on the other side of the health field and I tell ya, I am already tired of it. But at the same time, it is making me a better more understanding nurse.

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 2/16/2009 6:46 PM (GMT -7)   
Jaynurse - Gotta run out now but will get back to you tomorrow about your questions....
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 

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