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questions/ tests to ask for when see Reumatologist
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questions/ tests to ask for when see Reumatologist

Hi-i've been seeing dr for connective tissue disease for two years now, and would like to be proactive.
is there tests i should ask for?  also is there certain vitamins that can help? i read Mark Hyman's book
a while ago and he says certain vitamins etc help feel better?
12 Comments Post a Comment
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434278_tn?1324709825
Test to ask for:
ANA - 98% found in lupus (fair specificity)
anti DNA - 50% (excellent)
antihistone - 50% (fair)
anti-Sm - 25% (excellent)
anti-RNP - 25% (fair)
antiphospholipid - 33% (fair)
anti-Ro (SSA) - 30% (fair)
anti-La (SSB) - 15%  (fair)
antiribosomal P - 20% (good)
antierythrocyte - 15-30% (fair)
ANCA - 20% (poor)
antilymphocyte - most (poor)
antiplatelet 15-30% (poor)
antineuronal - 20% )good)
rheumatoid factor 30% (poor)
immune complexes - most (poor)

I'm assuming you've had a postive ANA.  What is your titer and pattern?  I'm also assuming you are aware of the 11 criteria for a lupus diagnosis.  
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434278_tn?1324709825
I've read where birth control pills can cause symptoms to flare up.  But I've read contrary to that too.  But as far as some pointers:

I would say to stay away from stress the best you can.  

Also limit, if not illimanate sugar from your diet.  This has been hard for me, but I know if I drink a coke, my joints immediately start hurting...sometimes they get red and swell.  

Stay out of the sun and use sun block.

Eat good healthy food.  And drink plenty of water.
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Avatar_f_tn
Thanks for the list!   Yes the ANA was positive. she mentioned something about  it was too soon to know, but I don't think the dr did all those tests.
i'ma afraid she'll say no.  --i've showed dr some red patches that I've had  (photos) and told her about "butterfly rash". have raynauds, sjogren, thyroid, autoimmune gastritis,  anemia, (dr told me i  had some arthritis in my spine acc to xray) but maybe since nothing with kidneys etc yet
then no diagnois yet??
ah the sun, it hurts my eyes-and I live in california-- ( i wouldnt mind moving to less sunny place)  Thanks for the advice.  have you found some particular food especially good? i'm trying to eat more veggies.
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Avatar_f_tn
Thanks!  yes I have been thinking about sugar--
also because my sugarlevels are up to 100
(i think body doesn process sugar well-gets dizzy after i eat it,
but sometimes it is very tempting)
what is a titer?
pattern that you mentioned?
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434278_tn?1324709825
First of all, your dr. may not want to do ALL of those test.  Mainly b/c if one is not elevated, the insurance company won't pay for the others.  Some of these are test they work into.  Kinda like, if you have blood in your urine, then the insurance company might pay for a CT (which otherwise, they wouldn't).

Get a copy of your labs.  Always request a copy and ask how you should go about getting a copy.  Some dr. offices will fax a copy, some want yout o come by in person and present photo ID along w/ DOB.

OK, titer is the amount of antibody in the blood sample.  Each time they wash the sample and still see antibody, the # gets higher.  So most of the time it goes like this: neg. 1:40, 1:80 (low positive) 1:160, 1:320, 1:640, 1:1280, 1:2,560 etc.  Each time they wash it and still see the antibody, the # doubles.  Then there is a pattern.  Mine was homogeneous.  Some patterns help point drs. toward a more accurate area to do further testing.  

Vegetables are highly recommended.  I guess things like potatoes might not be all that good - w/ your sugar levels rising.  And the nightshade plants - bell pepper and eggplan are not supposed to be good if you have arthritist.  I'm not very good at not eating what I want.  But I do crave vegetables.  I love steamed broccoli and turnip greens and cornbread.  
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Avatar_f_tn
ok thanks! I have appt in 2 days with reumatologist.
What should I ask?
I will ask for the tests that you mentioned ANA, anti-dna etc, but
what to say when dr says your creactive protein looks good, so youre prob. fine etc??  
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434278_tn?1324709825
Sorry, I'm just now seeing this.  How did your dr. appointment go.  Honestly, I don't think I've figured out how to converse with doctors.  I think sometimes they appreciate a straight forward knowledgeable patient and sometimes they don't.  
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Avatar_f_tn
dr got upset and short with me when i asked about tests and past results.
he got almost irate when i asked about possible checks for vitamin deficiencies etc. but he did put in bloodwork for next month- dr said he only does bloodwork once a year, but i kept insisting and he added some.(  My first dr I asked for and got without argument after 6 months.)  
new dr also printed out some past values when i asked him, but got feeling he did not appreciated a knowledgeable patient. some old results the ana was positive, the ssa was positive, titer was flagged at 1:160
some igGM and IgG antibodies were also flagged "A" not "normal". he says right now, since i have dry eyes they're calling it Sjogren's and unidentified connective tissue disease
  
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434278_tn?1324709825
Oh, so sorry your dr. was rude.  Such a shame.  It is YOUR body and YOUR blood they took and YOUR test.  Actually that makes me upset that he treated you that way.  The last dr. that treated me like I was imposing on him got a sturn talking to and the place where he was got a letter from me.  And I'm a very gentle person who is hard to get angered.  

The SSA (anti-Ro) is present in most patients with Sjogren's and 20-30% of those with SLE (lupus).  It may induce neonatal lupus and congenital heart block.  It can also cause an increased sun sensitivity  and is seen in nearly all patients with a skin disorder called sub-acute cutaneous lupus erythematosus.  

I don't completely understand IgM and IgG antibodies, but this is what I know.  IgM is associated w/ thick blood and blood clots.  IgG correlates w/ disease activity.  IgM can be associated w/ Sjogren's, but w/ or w/o Sjogrens IgM thickens the blood.  Symptoms that point to thick blood are  symptoms of confusion, dizziness, and mental clouding.  

The diagnosis sounds like he's on the right track.  I don't recommend you getting into a heated discussion w/ your dr. unless you plane on never going back.  
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434278_tn?1324709825
One more question, what pattern was your ANA?
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5470481_tn?1368484637
what do you mean about the 11 critia lupus pls explain to me i dont know much of anything about lupus yet
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434278_tn?1324709825
There are 11 common symptoms and findings that people with lupus have.  Any 4 of the 11 are needed for a lupus dx.  For example: I have 1. malar rash 2. mouth sores 3. photosensitivity 4. arthritis (joint pain) and 5. elevated ANA (but lately its been negative) - so they have reconsidered the lupus posibilities.

There are 11 criteria for a lupus dx.  You must have at least 4 of the 11 to recieve a dx.

They are:
1. malar rash over cheeks (butterfly rash) (74%)
2. discoid rash, red raised patches
3. photosensitivity - reaction to sunlight, resulting in skin rash (50%)
4. oral and nose ulcers
5. arthritis (95%)
6. serositis - inflamation (inflammation) of the lining of the lung or heart
7. reanl disorder - excessive protein in urine and/or cellular casts
8. neurologic disorder - seizures, or psychosis
9. anemia or low white blood count or lymphopenia or low platelet count
10. positive ANA
11. positive anti-DNA or anti-Sm, or antiphospholipid antibody or false pos. syphilis test

There are other common symptoms, but these are the criteria for a diagnosis.  
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