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Razzle
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Date Joined Aug 2007
Total Posts : 4392
   Posted 10/13/2007 8:49 AM (GMT -7)   
Got results back on a blood test done Monday.  It shows the distribution of different lymphocytes.  My doctor told me that the results are not consistant with primary SLE, but that the Lupus-like Syndrome I do apparently have is secondary to whatever is making my lymphocytes be so low.  But he couldn't tell me what the test results did indicate - and he's asked some Immunologists and they were puzzled also.  He mentioned that I might have to get a lymph node biopsy to get more info.  So who knows what's really going on.  This is so frustrating - it seems that tests just cause more questions than answers these days...  mad  
 
Thanks for being here to "talk" to...it does help to diffuse the tension about all this. 
 
(edited to add the title)
 
Take care,
 
 


-Razzle
Gluten & Sulfite Sensitivity, Multiple Food & Inhalant Allergies, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD (Lupus?), Osteoporosis, Anemia, malabsorption/malnutrition, etc.
Meds:  Pulmicort, Claritin, Injectable Vitamin B12, Herbs, Nutritional Supplements, Essential Oils, Homeopathy.


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 10/13/2007 9:15 AM (GMT -7)   
Hi Razzle,
 
Did your doctor mention Sjogren's Syndrome to you?  It attacks the lymph nodes.  It also makes the mucus membranes in your body all dry. Dry eyes, mouth, etc.  I have a mild case of Sjogren's. 
 
I think a biopsy is a good idea.  I wish I had more advice or ideas for you.  The biopsy will be the best way to figure out what is going on.
 
Stay strong!
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

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(stroke),Sjogren's, Raynaud's, seizure disorder, libman sach's endocarditis, vasculitis, sacroiliitis, Neutropenia, thrombocytopenia. Prednisone, Imuran, Coumidin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4392
   Posted 10/13/2007 9:26 AM (GMT -7)   
Hi Ginny,

Thanks for replying. My eyes get dry, but my mouth is always too full of saliva - to the point that I choke on it sometimes. I've had doctors mention Sjogren's to me, but when the antibody test for it comes back negative they then insist that I don't have Sjogrens and that the dry eyes are secondary to the Lupus-like Syndrome (UCTD). But 10 months of Plaquenil did nothing to help my dry eyes (and it really bothered my gut), neither does eye drops - the eye drops have junk in them that irritate my eyes all the more.

The swollen lymph nodes are the ones in the neck under the jaw bones. They've been intermittantly swollen for the last few years - before that, I never had swollen lymph nodes. Yeah, I'm thinking the biopsy may be what it will take to get answers. But that's what I thought when I went in for the bone marrow biopsy, but it just created more mysteries (no iron detected = very abnormal; all the immune cells were normal).

Thanks for your support. Take care,
-Razzle
Gluten & Sulfite Sensitivity, Multiple Food & Inhalant Allergies, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD (Lupus?), Osteoporosis, Anemia, malabsorption/malnutrition, etc.
Meds:  Pulmicort, Claritin, Injectable Vitamin B12, Herbs, Nutritional Supplements, Essential Oils, Homeopathy.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/13/2007 9:48 AM (GMT -7)   
Razzle,

You've got a great mystery on your hands. I don't know enough about all the labs to help . . . but I do think that getting to the bottom of it is important. Lots of lab work and tests in this forum, that's for sure. I'm glad your doc is chasing down the rabbit trails so to speak. They put all this info together and make a treatment plan. The worst is when they ignore things. So, I'm glad yours is doing all the appropriate follow-up.

Hang in there sis . . . all of this checking things our takes so much time and apt after apt.

Keep us posted.

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, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 10/13/2007 12:36 PM (GMT -7)   
Razzle,
I know you are frustrated beyond belief! Take care of yourself. You are in my thoughts and prayers, Judi

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4392
   Posted 10/14/2007 3:15 AM (GMT -7)   
Thanks for your support. I am glad to have a place like this to come to.

Take care,
-Razzle
Gluten & Sulfite Sensitivity, Multiple Food & Inhalant Allergies, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD (Lupus?), Osteoporosis, Anemia, malabsorption/malnutrition, etc.
Meds:  Pulmicort, Claritin, Injectable Vitamin B12, Herbs, Nutritional Supplements, Essential Oils, Homeopathy.


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 10/14/2007 7:25 AM (GMT -7)   
Razzle, I wish I had some some answers for you, but it looks like this is quite a mystery. I'm just really sorry you are having to go through this and that doctors don't know what's going on or what is causing these abnormal test results.

Regarding Sjogrens - not everyone with Sjogrens has the antibody for it. There are a certain percentage of people who have the antibody, but it's definitely not 100%.

I am really hoping it doesn't take too long for the docs to get to the bottom of this - it has to be frustrating and scary at times.

Take care and please keep us updated.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 10/14/2007 8:25 AM (GMT -7)   
Razzle, I'm so sorry you didn't get any answers from your blood test or your bone marrow test. It's so darn frustrating to be sick and for the doctors not to be able to determine what's wrong. Don't give up. They'll get to the bottom of it....I just hope sooner than later.

Thanks for the update.

Pat
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin

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