Author Topic: Confused with test results...  (Read 1454 times)

MissyLouWho?

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Confused with test results...
« on: January 18, 2012, 10:39:16 AM »
I got my test results from the lab (my rheumy says I have to wait until next Wednesday to see her to discuss them) and I am a little worried.  I 'll give you a little background first:

I have always tested positive for ana, ever since I was a teenager which I know can be normal in healthy people as well.  Periods have always been heavy and lasting for weeks, leading to a life-long battle with anemia.  Low platelets began 11 years ago with 1st pregnancy.  My mom has SLE, and her sister has Sjogren's.  My daughter (10) has a thyroid goiter with normal thyroid levels.   
So I'm a tiny little skinny thing with a hard labor job.  Was a stay at home mom for 10 years, then  1 1/2 years ago got the only job I could find, which being hard labor, is exhausting.  I began to fall asleep driving home every day.  I thought it was because of getting up at 4 am every morning and that I didn't get much sleep with 3 little kids and online college at night.  In the last week of October I got a lot of pvc's.  Annoying, but no big deal.  Then November 7th I completed and turned in a paper for school just fine, only to have the very next day an issue with being able to comprehend the next assignment.  I just couldn't understand the words.  Like they had been written in words that just didn't go together.  I couldn't process questions or directions.  And I began to drop things from my right hand.  And trip to my left.  Only to my left... My cardio put me out on medical leave so I get a lot more sleep now.  I am tired all the time and nap everyday, I forget everything, have episodes of sleep paralysis occasionally, sudden severe anxiety when driving, I stumble a lot, my fingers are slow, like when they are really cold, and now they fumble when I try to pick up little things like pencils or pennies. And of course arthritis in almost every joint.  And sadly, I am miserably cranky, nasty and can't remember the last time I laughed.  I do have dry mouth and eyes (especially when I wake up), and can't wear contacts  for the last 2 years due to they dry out in seconds after I put them in, and drops last a minute or two at most.

So I made an appointment with my family dr., and was sent to many docs and had lots of tests.  My cardiologist put me out of work for 3 months.  She said I have sinus arrhythmia, bradycardia, mildly leaky tricuspid and mitral valves (no prolapse). Nothing bad enough to do anything about and she really thinks the heart issues are secondary to something else.  Neurologist said the bradycardia could cause my symptoms (the beats get down to 30 a minute quite often) and should be treated.  I had an mri done last month, eeg done yesterday, a sleep study done last month, and will have an emg  :( done at the end of the month.  And lots of repeated blood work.  I saw a new rheumatologist 2 weeks ago and had blood work done.  These are the results:
Everything is Normal except what is bold.

Lupus Anticoagulant Comp~ none detected
CBC with Diff/Platelets
Creatinine serum
Urinalysis
Protein Electrophoresis
Iron and TBC
Hepatitis
Anticardiolip ab, iga/g/m qn
Beta 2 glycoprotein I ab, g, a, m
Antiextractable Nuclear Ag
RA factor
Anti-dsDNA antibodies
CCP antibodies Igg/Iga
Sed rate westergren
Creatine Kinase total serum
Complement C4 and C3
Aldolase
C-Reactive Protein, quant
Antithyroglobulin ab
BUN/Creatinine Ratio= 24  high
BUN=20(this is normal, but the highest # in the normal range)
Sjogren's anti-ss-a = <0.2 NORMAL
Sjogren's anti-ss-b 1.2 high

Vitamin D, 25 hydroxy= 16.8 LOW
Ferritin, serum= 10 LOW (I have been as low as 6 before and my hemo didn't worry)
Thyroid Peroxidase (TPO) Ab =41 high
Antinuclear antibodies IFA 1:160 High, Homogeneous pattern; antigen detected~ DNA (ds, ss), histone; suggested disease association: high titers - SLE


*Some things to note~  Blood work done 2 months ago showed:
BUN at 12, now 20
BUN/Creatinine ratio was 13.3, now 24
Platelets were 131, now 157
High MPV 12.7 with the low 131 platelets (wasn't tested this time)
T3, T4, TSH all were in the middle of normal range

So can anyone shed a little light on what might possibly be going on here?  The Sjogren's is high for the b, but not the a.  Lupus said none detected.  Bun/creatinine ratio and BUN doubled in the last 2 months, but the creatine is normal.  Platelets are FINALLY normal after 11 years.

Someone please help me understand.  Does this mean I have Sjogren's?

annabelle

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Re: Confused with test results...
« Reply #1 on: January 18, 2012, 11:15:00 AM »
Confused is right.  Although it doesn't help any, I think you just have to wait until the dr. puts it together.  You definitely have something going on that needs special attention.  Please let us know what you find out.

MissyLouWho?

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Re: Confused with test results...
« Reply #2 on: January 18, 2012, 03:41:33 PM »
Thank you annabelle.  It is just so frustrating!  I am one who likes to research and go in armed with information.  I'm so tired of hearing that even though they found something, they aren't doing anything about it because it's not bad enough  >:(

MissyLouWho?

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Re: Confused with test results...
« Reply #3 on: January 18, 2012, 05:34:28 PM »
I called my rheumy to see if they had anything sooner than next week and they had a cancellation for tomorrow morning! Looks like I may get an answer soon!  Fingers crossed that she knows what is going on and has a game plan  :)

annabelle

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Re: Confused with test results...
« Reply #4 on: January 18, 2012, 06:31:33 PM »
I'm glad you are able to get in sooner.  I understand what you mean by frustrating - I have an ANA of 1:1280, excruciating wrist pain in both wrists, corneal erosion and it seems like nobody thinks it's a big deal.  I am seeing a rheumy on Monday in NYC who is tops in the field so I hope he will draw some conclusions and give me some help.  I am practically going mental over this so I understand exactly what you are going through.  Best of luck to both of us!

MissyLouWho?

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Re: Confused with test results...
« Reply #5 on: January 19, 2012, 12:00:46 PM »
What a horrible appointment!!!  I am so sorry to say I will be finding another rheumy.  I waited in the waiting room for 1/2 hour past my appointment time (which was no big deal even though I got there 15 minutes early), and the first words out of her mouth when she came in the room was "I am going to make this quick because I have other patients"!!!! 

She went over the blood work I had done and said that she wants me to have the lip biopsy done and some test with paper and an opthamologist.  But even though I have one high test (ss-b was 1.2) and all the symptoms, she can't say I have SS for sure until the tests are done.  Ok, I understand that.  I have to take vitamin D to bring up my D levels.  Ok, I understand that.  So I ask about the other out-of-normal-range results.  The fact that my bun/creatinine levels doubled in 2 months?  Don't worry about, it's fine.  Your creatine level is normal.  My thyroid peroxidase is high? It's fine. Don't worry about it.  But I researched and found that it might be associated with Hashimoto's or Grave's disease? I am the doctor.  If you want to diagnose yourself with the internet you can, but you came to ME.  I really think you need to see a psychiatrist for antidepressants.  And stay off the internet.  So could Sjogren's and/or low D be responsible for the heart problems, the fatigue, the weak muscles in my hand?  The fatigue, but not the other things.  And I didn't even diagnose you with anything yet so don't go around thinking you have Sjogren's Syndrome until I TELL you that you have it.  Now I have other patients waiting...

Now she doesn't even want to see me back for 2 months.  So what do I do until then? Suffer?  Lose my job?  She won't extend my medical leave (you'll have to call your family doctor for that, I don't even have a diagnosis.  How am I supposed to fill out paper work without a diagnosis? Hmm? and my family doc was like "we haven't seen you in a long time...we can't extend leave" so it's either lose my job or go back to moving washers, dryers and ranges and carrying vanities by myself up and down ladders all day.  I cried the whole way home  :'(


Even my husband said he got the feeling she didn't like me and we had to find someone else.  I am so devastated.  I thought for sure she was going to put it all together and have a game plan and I would be on the road to wellness.

Annabelle, I really hope your appointment goes well Monday!  I hope he realizes what a big deal it is to live like that, even if he isn't the one living with it.  **hugs, prayers, and positive thoughts**