Looking For Answers (please help, I'm a mom of 2 small children)

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tbluhm
New Member


Date Joined Aug 2015
Total Posts : 4
   Posted 8/24/2015 11:53 AM (GMT -6)   
Hi everyone. I was hoping that maybe someone could help me here on this forum. My family doc referred me to a rheumatologist but she can't see me for 3 weeks. My last blood tests were as follows:

White Blood Cell - Low out of range
Red Blood Cell - Low Out of Range
Red Distribution Width - Low out of range
Platelets- Low almost out of range
Antinuclear Antibodies - POSITIVE
AUTOIMMUNE DIFF - ABNORMAL
EPSTEIN BARR - ABNORMAL range is 0-17.9 and mine was 296
NEGATIVE FOR : MONO, RHEUMATOID ARTHRITIS, and THYROID PROBLEMS

For about the last 10 months I have been having severe fatigue, some days staying in bed for hours and hours, my hair is falling out in clumps in the shower, I am having night sweats off and on, headaches, muscle weakness and spasms, only one side of my tongue is swollen, pain in some joints like knee, hip and shoulders. Lumps coming up under the skin on hands and then disappearing, but one lump near my collar bone that is staying put. Very tender when I touch it. Sometimes I have burning pain in my right breast and sharp shooting pains in my abdomen that feel like they go all the way to my back. Also- some pain under my right armpit.

Does anyone have an idea what this might be? My doctor said she didn't think it was lupus because I have never had a rash in my life and the lumps do not sound like lupus. I am hoping they will be able to rule out Lymphoma, Lupus, Multiple Sclerosis, Amyloidosis, Lyme, and Leukemia. But it is just frustrating that I have to wait so long and I stay home and take care of my 2 precious babies all day but I feel so horrible right now. Please help! Any answers or guesses would be very appreciated.

tbluhm
New Member


Date Joined Aug 2015
Total Posts : 4
   Posted 8/24/2015 11:57 AM (GMT -6)   
I forgot to mention that I am a 32 year old Female.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 8/24/2015 12:00 PM (GMT -6)   
Unfortunately, we aren't doctors just regular old Lupus patients so we aren't even qualified to "guess".

Don't know what your "lumps" might be. Are they hard or do they have fluid in them?

I don't quite understand your Dr saying "it's not Lupus cause you don't have a rash" -- that's pretty crazy, Lupus comes with and without rashes, it isn't really that common a symptom.

Your blood counts being so low & out of range seems like it'd be some sort of blood issue, and that would certainly account for you feeling like crap. We don't function if our blood isn't doing it's job!

Hang in there till your appointment -- perhaps you could call and get on a cancellation list and maybe be seen sooner?

Best wishes,
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

tbluhm
New Member


Date Joined Aug 2015
Total Posts : 4
   Posted 8/24/2015 3:13 PM (GMT -6)   
Thank you for the response! I thought that was a little odd as well (the rash comment). I've googled (I know, I know, googling is not the best idea when you've got something like this going on! ha! ) and I've seen several cases of people having lupus with no rash. And lumps are always hard.

I called and got on the cancellation list, though! Great idea!

You mentioned you were a Lupus patient ... how long ago were you diagnosed? And do you mind if I ask if you had any similar symptoms as mine? Low blood counts?

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 8/24/2015 3:25 PM (GMT -6)   
Diagnosed 2002, had some really difficult periods, especially with major cognitive dysfunction. Thankfully Cellcept made my Lupus go "quiet" around 2010-11 or so. (Rheumatologists don't say "remission".)

Symptoms included but not limited to severe fatigue, hair loss, night sweats, day sweats, muscle aches/pains/weakness, burning joints, major cognitive issues.

But I don't recall ever having the low blood counts you are seeing. I haven't heard of those being associated with Lupus before...
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

tbluhm
New Member


Date Joined Aug 2015
Total Posts : 4
   Posted 8/27/2015 10:48 AM (GMT -6)   
My ANA came back at 1:320 and the patterns were speckled and homogenous. But the other test (Ena? or something like that?) came back negative for anything. It was all normal. I wonder what that means?

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 8/27/2015 10:53 AM (GMT -6)   
The homogenous pattern is the one most commonly seen in healthy individuals who have positive ANA tests. A speckled pattern is found in SLE and other connective tissue diseases.

Check out Lupus 101 for more info on ANA.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 8/29/2015 2:17 AM (GMT -6)   
Hi there and welcome to our forum. I'm sorry that you've been feeling so unwell and I know that you're worried. I've had lupus since I was 23 years old, I'm now 50 and it took my Doctors 13 years to say yes, that I did have lupus and started treating my symptoms.

Some of your symptoms are not related to lupus at all. Others, could possibly be but I'd really question them. I have to say that your blood results really don't match lupus. However, like Lynnwood said, we're not Doctors and can't even begin to "guess" what you might have going on.

I know that 3 weeks seems like a lifetime, but some of the folks here have to wait months before getting into the Rheumy. Like up to 6 months to just see them. You, have been rather lucky in only having to wait 3 weeks to see the Rheumy. Hang in there and try not to focus on what you're reading on the Net.

Wishing you the best and please ask any questions you have. Hopefully, someone can answer your questions. Let us know what the Rheumy has to say once you've seen them.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.
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