immune related tests i should order for bilateral paresthesias...gloves?

[waif]

i'm so overwhelmed
i don't even know, do i go to anohter rheum?
i want like my immune system thoroughly checked for viruses and the ydon't do that??

 

[waif]

eeep, you have a lot of good information in your post.. i'm so frazzled i can barely read

i had the "with reflex" test and it was negative but i didn't understand what that meant, good to know. i was actually wondering that in an earlier post, like what if you just started taking plaquenil to see what happens...though it does take months to kick in. nose pain to me seems like a rp symptom? i never hear people complain about their noses. my nose would ache but i had a deviated septum.

this random info seems useful

• Antibodies to DNA (the protein that makes up the body's genetic code) are found primarily in SLE.
• Antibodies to histones (DNA packaging proteins) are usually found in people with drug-induced lupus (DIL), but may also be found in those with SLE.
• Antibodies to the Sm antigen are found almost exclusively in lupus, and often help to confirm the diagnosis of SLE.
• Antibodies to RNP (ribonucleoprotein) are found in a number of connective tissue diseases. When present in very high levels, RNP antibodies are suggestive of mixed connective tissue disease (MCTD), a condition with symptoms like those of SLE, polymyositis, and scleroderma.
• Antibodies to Ro/SS-A are found in people with either lupus or Sjogren's syndrome, and are almost always found in babies who are born with neonatal lupus.
• Antibodies to Jo-1 are associated with polymyositis.
• Antibodies to PM-Scl are associated with certain cases of polymyositis that also have features of scleroderma.
• Antibodies to Scl-70 are found in people with a generalized form of scleroderma.
• Antibodies to the centromere (a structure involved in cell division) are found in people with a limited form of scleroderma which tends to have a chronic course.

going to try to go to "bed" now..whatever that means

 

[TrixieStix]

@waif Sorry your feeling so overwhelmed and frazzled. I get it. It looks as if your complement levels are normal after all. That's good news. But I do know how frustrating it can be to think perhaps you've found a possible clue or abnormality only to find out that it really is not abnormal or a clue after all. I've experienced my own share of them.

In terms of SS-A and SS-B do be aware that at least 30% of people with Sjogren's are seronegative which is why being negative for those tests does NOT rule Sjogren's out. Lip biopsy would be the next step. Lip biopsy is considered the gold standard for Sjogren's diagnosis.

As for your immune system that would not be something a rheumatologist deals with. That would be an immunologist. Perhaps you can get a referral to see an immunologist.

Yeah an "ANA with reflex" tests for specific antibodies that are not checked if you ANA comes back negative. Mine have always been negative (except for one i guess that was borderline positive) so those other tests have never been run.

 

[TrixieStix]

@waif I am on day 4 of the steroids. I've definitely seen improvement in some of my RP-like symptoms, but now that I am tapering down off of them I'm noticing the symptoms going back to their baseline again. My response to the steroids is another check in the column for it being RP. If I indeed have RP (I'm feeling 90% sure I have it at this point) then steroids are about to become a part of my life forever most likely Along with drugs like Methotrexate, etc. And it means likely my life will be shortened by the disease as it considered a severe, progressive disease. Just less than 10 years ago 5 year survival rate was 75% and the 10 year survival rate was only 55%. This has improved some though in recent years due to better drugs for treating it.

Even though the steroids improved my symptoms some and likely mean I need to keep taking them I want to hold off on continuing them until after I've been seen by the ENT, have dynamic CT scan done of my trachea/throat, and have completed the pulmonary function testing, and any other tests that need to be done. 50% of those with RP have trachea/throat involvement (this is biggest risk for death from RP) and I have the symptoms of RP trachea/throat involvement so I want to make sure it's evaluated thoroughly and soon. I have not heard from the ENT scheduler so I will call tomorrow to make the appointment.

So far I'm finding great support and information in the Facebook RP groups. A few seasoned RP'ers are convinced 100% that I have RP based on my photos and symptoms. My presentation is very classic RP they say.

 

[TrixieStix]

@waif hope your able to get some sleep. thinking of you.

 

[waif]

They're at the bottom of the range, literally

They aren't normal

 

[waif]

i had no idea that rp was so serious! steroids terrify me but it does sound like taking drugs is actually the best way to figure out what the problem is...like if i took steroids i doubt i'd feel any better, tbh.

i'm looking up pictures of it. red ear disease.

i'm glad i looked into the ana test again
http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=19946

it tests for rnp=mixed connective tissue disease

i'm leaning towards sjogren's, bacteria/viral...or both/all three blaaaah

another thought i had, my neuropathy mostly manifested in my brachial plexus. so maybe i don't have TOS at all and it's brachial neuritis from whatever else is wrong

 

[waif]

part of why steroids scare me is because i have insulin resistance, despite being painfully thin,
hopefully you don't have that too!

 

[waif]

@TrixieStix do you know if there's a difference between sjogren's patients who have a positive ANA/RF vs. ones who don't, maybe they just have a positive lip biopsy and match the symptoms, in terms of the progression of the disease? i wonder if in a few years my ANA will be positive? my neuropathy is so severe though, idk.

i'm still worried i floxed myself. and i'll never be able to figure that out. it's depressing.

 

[waif]

http://pubmedcentralcanada.ca/pmcc/articles/PMC1010603/pdf/annrheumd00245-0092.pdf

this fascinates me bc my immunoglobulin levels are normal...actually i don't trust that lab, i need to get them checked again. i might order it myself online.

Considerable elevation of IgG levels in SLE has been previously reported (Cass, Mongan, Jacox, and Vaughan, 1968), with little elevation of IgA or IgM. Compared with SLE, Sjogren's syndrome is a chronic and relatively benign disease. In autoimmune diseases with initially raised IgG, Hobbs (1970b) has observed subsequent elevation of IgM.

Summary Marked elevation of IgG and IgM levels were found in fifty patients with Sj6gren's syndrome, and a lesser increase in IgA levels. There was little difference between patients with sicca components alone and those with rheumatoid arthritis, but in a smaller group with systemic sclerosis levels of all three immunoglobulins were very elevated. By comparison immunoglobulin levels were only modestly raised in patients with uncomplicated rheumatoid arthritis.

 

[waif]

I know this is extremely unlikely but another thought I had was I've been very quick to lump together my C3 and C4 results. But it's possible I have two separate things going on... Like I had Giardia for 2 years, and my stomach is still completely jacked up. I would think that would affect C3. And it's naive of me to think I only had Giardia during that time. I can't wait to order my stool sample.

Experienced a bizarre flare up a month ago with my stomach burning and then it sent pins and needles all over my body, made my hands more gloved. It started in my stomach which makes noooooooo sense to me

It's funny how ehlers-danlos syndrome now seems so easy to manage compared to whatever I'm experiencing. I'm extremely cautious about keeping my joints in the right place. This is Out of my control

 

[waif]

someone at work got me sick too
like i'm so mad, she said it wasn't contagious but i've had this wheezy feeling in my throat for 2 weeks

 

[waif]

so next week i'm going to an infectious diseases doctor and he'll probably laugh at me

i have 2 rheum appointments at the beginning of next year and i can't wait

i'm going to ask for (based on this guide https://sites.google.com/site/cfstestingandtreatmentroadmap/):


Epstein-Barr Viral Capsid Antigen (VCA) Antibody (IgA), IFA OR Epstein-Barr Virus Early Antigen D Antibody (IgG)
herpes virus six HHV-6 IgM Antibody OR HHV-6, IgG Antibodies
Cytomegalovirus CMV IgG Antibodies

because i get cold sores so easily, at the peak of my giardia i had 2 that lasted for a month and valtrex didn't get rid of them....if anything it delayed things.

i think the girl at work gave me strep

i retested my iggs
igG 1026.00 700.00-1600.00 36.2%
which is fine by me..on the last test they were at 41%

i'm only pursuing the subclasses if all of my other labs are completely normal
https://shop.personalabs.com/product/immunoglobulin-g-subclasses-1-4/

another problem, i've had too much labwork lately. my ferritin must be so low and i can't tolerate iron.

here's igE
https://shop.personalabs.com/immunoglobulin-e-ige/

 

[waif]

i don't think i have staph but this is interesting regardless
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1536978/

Serum levels of complement components C3, C4 and factor B were measured in twenty-five patients with Staphylococcus aureus bacteraemia. The levels of C3 were depressed in nine patients, five of whom also had low C4 levels, indicating activation of complement via the classical pathway. Two patients with low C3 levels also had low factor B levels, one of these being in association with a low C4 level, which indicates activation of both the classical and alternative pathways, the latter being via the C3b feedback cycle. The protein A content of the S. aureus cultures, as shown by the indirect haemagglutination titre, was high in nine patients with C3 hypocomplementaemia. There was some correlation between the presence of a high protein A content of the S. aureus culture and a low serum C3 level in the patient. Some clinical evidence of immune complex disease was found in three patients. Complement activation in S. aureus bacteraemia is most likely due to complex formation resulting from the interaction between the Fc portion of IgG and staphylococcal protein A. These complexes may also result in clinical symptoms of immune complex disease.

 

[waif]

i found a cool pdf with two charts:
one listing causes of multifocial neuroapthy
and then basic blood tests..
https://med.nyu.edu/neuromuscular/sites/default/files/neuromuscular/ch20b.pdf

low complements could mean
sle, rv (rheumatoid vasculitis), Encephalomyocarditis, sjogren's, classic polyarteritis nodosa

 

[waif]

so i have 2 rheum appointments coming up
i'm going to ask for a lip biopsy bc i am convinced i have sjogren's. just a gut feeling. i would say MS but my eyes are so dry. it has to be sjogren's.

this is a great article

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3602968/

i have ACD

Abnormalities are frequent and may be the first sign of latent SS. Anemia of chronic disease and hypergammaglobulinemia are common hematologic manifestations at diagnosis and during the course of pSS. Patients with anti-Ro antibodies have the highest frequencies of hematological abnormalities and altered immunological markers.

@TrixieStix i have 2 questions..idk if you'd know the answers to them. would taking plaquenil increase my c3, c4 levels? is that how doctors know it's working? also, are there any sensory neuropathies associated with sjogren's in addition to small fiber? thanks! kind of anxious because i want biopsies and i'm sure they're expensive af. oh well.

if i have SFN, treating sjogren's with plaquenil wouldn't help with that right? i guess people with sfn are screwed, idk.

i don't get it, my IGgs level is normal

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4955261/
Intravenous immunoglobulin therapy for small fiber neuropathy: study protocol for a randomized controlled trial

 

[waif]

@TrixieStix do you know anything about transverse myelitis?

the symptoms of it describe me...especially when my hands first went numb

https://www.mayoclinic.org/diseases-conditions/transverse-myelitis/symptoms-causes/syc-20354726

You may feel as if something is tightly wrapping the skin of your chest, abdomen or legs.

 

[waif]

awaiting c3 c4 labs again, i'm scared

i'll post everything here. my iga igm and iggs are great

(first number is the actual lab result, the next number is the bottom of range, top of range, percentage result falls on range)

igA 188.00 81.00 463.00 28.0%
igA 207.00 84.00 499.00 29.6%
igG 1076.00 694.00 1618.00 41.3%
igG 1137.00 610.00 1616.00 52.4%
igM 174.00 48.00 271.00 56.5%
igM 186.00 35.00 242.00 72.9%

 

[waif]

good news i guess
my complements have definitely gone up a little. i doubt they're in the optimal range but at least they aren't in the very bottom
I'm curious how much complements fluctuate.
my c3 has improved a lot but my c4 hasn't budged much

at first I thought it was identical to my labs in november but then i realized the ranges are completely different.

c3 10-2016 70.00 (90.00-180.00) -22.2%
c3 11-2016 93.00 (90.00-180.00) 3.3%
c3 01-2018 94.00 (81.00-127.00) 28.3%

c4 10-2016 11.00 (16.00-47.00) -16.1%
c4 11-2016 17.00 (16.00-47.00) 3.2%
c4 01-2018 16.00 (13.00-39.00) 11.5%

 

[waif]

other labs, basically he repeated labs i already had......

i drank too much water so I don't trust my urinalysis results but they told me not to retest, oh well

value range
sodium 135 136 - 145
potassium 3.8 3.5 - 5.1
chloride 101 98 - 107
carbon dioxide 25 23 - 29
anion gap 9 2 - 11
osmolality 270 275 - 295
glucose 107 70 - 105 (not fasting)
blood urea nitrogen 9 7 - 15
creatinine 0.77 0.6 - 1.2
bun/creat ratio 12 7 - 21
gfr >70 >=60
protein 7.2 6.4 - 8.9
albumin 4.6 3.5 - 5.7
bilirubin 0.5 0.3 - 1
calcium 9.7 8.6 - 10.3
Alanine Aminotransferase 10 7 - 52
Alkaline Phosphatase 44 34 - 104
Aspartate Aminotransferase 12 13 - 39
White Blood Cell Count 6.1 4 - 10
Red Blood Cell Count 3.98 3.93 - 5.22
Hemoglobin 12.8 11.4 - 14.4
Hematocrit 38.6 33.3 - 41.4
MCV 97 79.4 - 94.8
MCH 32.2 25.6 - 32.2
MCHC 32.2 30 - 36
Red Cell Distribution Width-CV 12.7 11.7 - 14.4
Red Cell Distribution Width-SD 45.3 35.1 - 43.9
Platelet Count 249 150 - 400
Mean Platelet Volume 10 9.4 - 12.3
Specific Gravity Urine 1.005 1.016 - 1.022
ph urine 8 5 - 8
Protein Urine Qualitative negative
glucose urine negative
Ketone Urine Qualitative negative
Blood Urine Qualitative negative
Urobilinogen Urine Qualitative <2.0 <=2.0
Nitrite Urine Qualitative negative
Leukocyte Esterase Urine Qual negative
Bilirubin Urine Qualitative negative
WBC/HPF 0 <=5
RBC/HPF 2 <=2
Squamous Epithelial/LPF <1 <=5
ANA by Immunofluorescence <1:80 <1:80
dsDNA Antibody IgG Titer 1.5 <=10
ENA Screen with Reflex negative negative
Rheumatoid Factor <20 0 - 20
total protein 6.8 6.4 - 8.9
crp <1 <=10
Hepatitis B Surface Antigen negative negative
Hepatitis B Surface Antibody Quant 1.15 <=999.99
Hepatitis B Core Antibody Total negative negative
Chronic Hepatitis B Interpretation can't be displayed
Hepatitis C Antibody negative negative