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Lupus Community
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967168 tn?1477588089

Couple of questions

just wanted to say hi and ask some questions

I've been a member of the heart ryhthm & disease communities as well as sleep & depression ones since last year.

I had some heart procedures done last year and a ton of testing, but no doctor has put together my craziness until I saw a neurologist this past week.  Since surgery I've had numbness in my left hand & leg to where I've burned my hand while cooking and my leg sometimes where I fall or can't walk, so I went to see if she could yield some answers.

After taking a complete history, symptoms etc, she said there's a great possibility I have Lupus.  She orderd ANA CBC CMP says screen (?) & urine immuno (?) fixation? HGAC or HBAC, DA or DX Neuropathy and I'm having a CT of my spine to DX L4/S1 radioneuropathy(?)  I can't read her writing and want to look up what these are, would anyone know what these are called?  I'm also have EMG's for upper/lower body and nerve conduction testing.

Any tests she may have left out I need to ask for?

After reading about Lupus, I have 8/11 of the criteria of diagnosing - 2 of the 3 I don't have; may be confirmed during labs I'm having done Friday.

Another question, has anyone had hair loss related to Lupus?  I went in Jan 09 got my hair done;  then March 31, 2009 my hairdresser freaked out - panicking about my "holes" in my head.  I had 3 quarter size patches where there was no hair on my right side, 1 dime size patch in the back and 1 quarter size patch or half dollar size on my left side. I took pictures to compare if I had more or it worsened, but my hair grew back within a few months and I forgot about it until now.

This may seem like a gross question, but I have to ask.  Has anyone noticed a difference in their armpits? I can't believe I'm asking but I have to know.  Since I've had a sun sensitivity the past 1 1/2 years, I've become extremely light skinned where before I stayed a deep American Indian Tan...

now to the embarassing part, my husband noticed my problem before I did - my arm pits are a dark mahogany brown patchy color, it just cropped up one day and I noticed my body odor has changed - infection maybe? I've never had a high PH or odor; but more of a sweet smell like a diabetic, but no glucose problems, any clue what's up with that?

Thanks in advance for any info & suggestions.
5 Responses
434278 tn?1324709825
I don't have a clue what could be going on with the dark patch and the sweet odor.  Maybe address that one to a MD.  

Which of the 11 do you have?  

ANA - test for autoimmune disorders, but can be elevated in other illnesses.
CBC - complete blood count (this is where they check your white blood count, sed rate for infection, red blood count for anemia, etc
CMP says screen (?) - comp 3 & 4 - this test to see if an autoimmune disorder is affecting your kidneys
& urine immuno (?) fixation? HGAC or HBAC, DA or (I have NO clue)
DX Neuropathy - diagnose neuropathy (just basically you have tingling in your hands and or feet)

Hopefully this helps
483733 tn?1326802046
Yes, hair loss can be a symptom of Lupus.  You should have your doctor take a look at your armpits.  I wonder if you might have discoid lesions there that are causing the discolorization.
967168 tn?1477588089
Thanks I'll mention it to her when I go back and ask about the underarms.  I took all my medical records that I have from 1997 on and listed them with dates symptoms etc.

I 've had dizziness/fainting - since age 9 - no pattern; headaches - since teen years; miscarriages; Group B Streptococcus (pregnancy) blood sepsis; extreme swelling in feet, edema in legs, hands - off & on since 1997; anemia (11.0); skin rashes - mainly upper trunk area, head/scalp; kidney/urinary problems; left flank pain; EFGR 66/Creatnine 1.0; WBC, blood, URO, ketones, leukocyetes in urinalysis; extreme fatigue; shortness of breath; abdominal discomfort/pain; nausea, vomiting, diarrhea, constipation intermittently; abdominal pain/bloating; enlarged liver; diffusely echogenic; numbness on feet; chest pain; nausea, vomiting and diarrhea; lump under left arm - baseball size with no known cause; left flank pain, diarrhea, constipation, on cold symptoms, feels like flu; extreme fatigue; urine dipstick - 1+ leukocyes; EKG - Sinus Rhythm 51, multiple PVC's, incomplete RBBB, QT interval short for rate; EFGR - 59; creatnine 1.3;  palpitations, arrythmia's; rash across cheeks and nose (looks like a sunburn;worse when in sun); sun/light sensitivity; heat intolerance; hair loss; joint & muscle fatigue/pain; mouth/tongue sores (roof of mouth, side of tongue); poor memory/brain fog; sometimes it's difficult to remember events and simple names of things, other times no problems at all; depression; sore throat; numbness in left hand/leg; muscle pain & tenderness; stiffness/soreness upon waking; blurred vision, eyeball pressure (feels like eyeballs are going to pop out) itching, dry eyes, occassional excessive watering; right eye twitches; ringing in ears; Moderate obstructive sleep apnea; NCS/OI; Autonomic Nervous System dysfunction; Cardiac Ablation - malignant heart arrythmia's.

I just had my first round of immunological (sp?) blood tests ran on Friday, so I'm waiting on the results no doctor has put together my medical history and said this is what I think is wrong with you until I saw my neurologist 2 weeks ago.
967168 tn?1477588089
What's my next step?

My ANA was negative, everything else except my MCHC was 31.9 [Low] and my EFGR was 59 [low] A1C was 5.8 [high] yet my glucose was 74 [normal]

I have to wait to go back to my neurologist because a mix up with my insurance :(
434278 tn?1324709825
WOW, I know how discouraging it is to be sooo very sick and be passed around.  I remember just wanting to chck into a study hosopital and let them figure it all out.  

1. Have they treated you for the leukocytes in your urine?
2. low MCHC - rule out reticulocytes (too many young red cells), and iron deficiency. (31.9 is just boarderline and may not be considered anything.)
3. low EFGR - kidney function breakdown.  (Although 59 is right on the boarder, so it could be "watched".  

I'm not familar w/ the A1C.  I read that it indicates the average glucose for the last 6-8 weeks.  A high level suggest poor diabetes control.  I know glucose levels can fluctuate.  But I wouldn't think that diabetes could be causeing everything that you are going through.  Maybe the kidney function problems.  

Have they done a CT to check for kidney stones?  

Do you have ketones in your urine regularly?  If so do you go w/o eating at times?

I have printed out your list of symptoms and will go over them.  You have so many things going on.  Do you have elvated liver enzymes w/ the swollen liver?  Does it feel swollen or has a dr. confirmed this?  Have they done a US or HIDA scan on your gallbladder?  You mentioned nausea, diarrhea and throwing up (3xs) in you list.  So I know that is screeming at you.  It screemed at me too.  

I'm so sorry you are going through all of this.  I really want to help you.
Praying for you.  In Jesus name.
Kara
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