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momofltlbrat
Regular Member


Date Joined Apr 2007
Total Posts : 164
   Posted 8/8/2008 5:44 PM (GMT -7)   
Hi all,
 
I usually post on the MS board, but my doctors are now leaning towards autoimmune.
 
Does anyone know what it means to have a climbing inflammation rate, from 17 to 41 in 3 months, the norm is 5, and to not have an elevated SED rate?
 
I seriously think I should call Diagnosis unknown.
 
Debbie

MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 8/8/2008 5:51 PM (GMT -7)   
Debbie,
Welcome to the forum! I was curious about what kind of symptoms you are having. Labs can be so variable and affected by so many things. It's really important to put more emphasis on how you feel and what you are experiencing in my opinion. When you say 'inflammation rate' are you talking about your c reactive protein? Have you seen a rheumatologist? Judy

momofltlbrat
Regular Member


Date Joined Apr 2007
Total Posts : 164
   Posted 8/8/2008 6:39 PM (GMT -7)   

Judy,

Yes, I am following with a rheumy and my neurolgist.  I have numbness that comes and goes, vertigo, painful joints, fatigue, low grade fevers, weakness and overall achyness, chronic hives.  My dx has gone from seronegative lupus, to fibromyalgia, to MS, to vasculitis, to some type of autoimmune, possibly lupus.  My docs are working together and doing some tests I haven't had in the 20 years I've been ill.

The inflammation I spoke of is the crp.  I expected the sed rate to be elevated with that, but it isn't and we are stumped.

Debbie


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 8/8/2008 6:55 PM (GMT -7)   
Debbie,
I have seronegative lupus. It was diagnosed by kidney biopsy. My crp/rheumatoid factor/esr were elevated. Of course these wax and wane. If you are being treated with any medications it can also affect the outcome of you blood work. Are they trying to control your symptoms with meds? I know this is such a frustrating thing to be in diagnosis limbo. You will find many people here who are either there with you or have been there. Hang in there and don't give up! You will find wonderful support and advice here. God Bless you, Judy

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 8/9/2008 8:33 AM (GMT -7)   
Debbie,

When I was being dx my CRP was always negative and my SED was always elevated.... go figure!!!! I pray your doctors figure this out soon, I remember how frustrating it is. Judy is right, the important thing is that the docs are treating your symptoms. Take care and keep us posted on how you are doing.
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Davocet (as needed) and magic mouthwash (for mouth sores)


momofltlbrat
Regular Member


Date Joined Apr 2007
Total Posts : 164
   Posted 8/9/2008 11:44 AM (GMT -7)   
Hi all,
 
Thanks for the support.  My neuro and rheumy are working together.  They are trying to treat the symptoms, and figure out what to do next.  I had a kidney biopsy because of blood in the urine, but that came back negative.  My docs are as frustrated as I am, but they aren't dealing with the symptoms.  Whatever, I keep trying anything that might help.
 
Debbie

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 8/9/2008 8:15 PM (GMT -7)   
The blood tests will drive you crazy!  I'm the opposite of Stacey.  I'm positive for the CRP, but my sed rate is normal.  BAH!!!  Why is this disease so stupid.....
 
Keep a diary of all your symptoms.  Try to track patterns if you can.  Might make things easier for your doctors too.  It might take a bit to figure it all out, but it will come. 
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 8/9/2008 9:25 PM (GMT -7)   

My bloodwork is like yours.  Crp through the roof - sed rate normal.  Positive ANA - but otherwise negative on the other markers for autoimmune, except for recent leukopenia with the last flare w/ fever.   Already have a fibro dx, w/ chronic fatigue and probable chronic epstein barr.  Rheumie and pcp are trying to put the puzzle pieces together to see if Lupus is a part of the picture as well.  An answer would be helpful - especially since I'm not being treated right now and can barely remember what it's like to feel well!  Hang in there - it's so helpful to know others understand the frustration of the diagnosis limbo, and have been through it too!

Peace,

Lucy

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