Do you have positive ANA speckled pattern?

[green_monster]

Hi Taniaaust, Cant write much just now. My veins thing gradualy got worse at the same time as the rest of the ME stuff over a number of years. I'll try write more soon...

 

[drob31]

Everyone with spots on the MRI that aren't quite like MS:

Have you ever been tested for antiphospholipid antibodies?

 

[WillowJ]

Everyone with spots on the MRI that aren't quite like MS:

Have you ever been tested for antiphospholipid antibodies?

http://www.hughes-syndrome.org/about-hughes-syndrome/brain.php

Interesting.

 

[Strawberry]

@drob31 and @WillowJ I am not aware I have ever been tested.

 

[taniaaust1]

Also back to taniaaust1, I can't remember for sure, but I think my cortisol levels were normal. I know my hormones are at a level much younger than my age, I'm not pre menopausal. Is cortisol one of those?

No I don't think cortisol is one of those hormones which vary with age.

 

[drob31]

@Strawberry @WillowJ

If you match up with the symptoms it may be worth getting.

 

[Strawberry]

From Willows link above:

However, in some cases, one way to establish whether a person has Hughes/antiphospholipid syndrome as opposed to MS, is to treat them with low dose aspirin and see if their condition improves. Warfarin is not recommended in view of the risks of bleeding associated with warfarin, especially in older patients.

Maybe it is worth trying baby aspirin? I would assume that if aspirin doesn't give me a noticeable improvement, then it probably isn't sticky blood?

 

[drob31]

From Willows link above:

Maybe it is worth trying baby aspirin? I would assume that if aspirin doesn't give me a noticeable improvement, then it probably isn't sticky blood?

Using aspirin is an empirical way to treat it. I've read that some really need an anticoagulant and not aspirin as aspirin is a thinner.

One thing I thought of which may confound the treatment is salycate sensitivity.

 

[WillowJ]

I felt some better on aspirin but it was bothering my GI system.

 

[drob31]

Ok, so I just got the antiphospholipid comprehensive done, and it doesn't detect antibodies like the cyrex test does.


My beta2-glycoprotein is 15, positive is above 21. That seems suspicious.


Needless to say, I'm not sure what to think.

APTT 36.3 sec 01
Reference Range:
18 - 60y: 23.4 - 36.4
APTT 1:1 NP
Test not performed 01
Not indicated
APTT 1:1 Saline
Test not performed 01
Not indicated
DRVVT Screen Seconds 46.8 sec 01
Reference Range:
<55.1
DRVVT Confirm Seconds
Test not performed 01
Not indicated
DRVVT Ratio
Test not performed 01
Not indicated
Hexagonal Phospholipid Neutral
0 sec 01
This value is NEGATIVE.
Reference Range:
<8
Platelet Neutralization 0.0 sec 01
Reference Range:
0.0 - 3.0


Anticardiolipin Ab, IgG <10 GPL 01
Reference Range:
Negative: <15
Indeterminate: 15 - 20
Low to medium positive: >20 - 80
High positive: >80
Anticardiolipin Ab, IgM <10
Reference Range:
Negative: <13
Indeterminate: 13 - 20
Low to medium positive: >20 - 80
High positive: >80
Anticardiolipin Ab, IgA <10 APL 01
Reference Range:
Negative: <12
Indeterminate: 12 - 20
Low to medium positive: >20 - 80
High positive: >80
Beta-2 Glycoprotein I, IgG 15
Reference Range:
Negative: <21
Beta-2 Glycoprotein I, IgM <10
Reference Range:
Negative: <33
Beta-2 Glycoprotein I, IgA <10
Reference Range:
Negative: <26
Antiphosphatidylserine IgG 2
Reference Range:
<16
Low Positive: 16 - 30
Moderate Positive: 31 - 50
High Positive: >50



Antiphosphatidylserine IgM 3
Reference Range:
<22
Low Positive: 22 - 35
Moderate Positive: 36 - 50
High Positive: >50
Antiprothrombin Antibody, IgG
3 G units 01
Reference Range:
<21
Antiprothrombin Antibody, IgM
14 M units 01
Reference Range:
<21
LAC Interpretation 01
A lupus anticoagulant is not detected. All antiphospholipid
antibodies evaluated are normal. As antibody titers may
fluctuate with time, repeat testing may be indicated.
Please contact Esoterix Coagulation if further
clarification is needed.

 

[Strawberry]

Ok, so I just got the antiphospholipid comprehensive done, and it doesn't detect antibodies like the cyrex test does.


My beta2-glycoprotein is 15, positive is above 21. That seems suspicious.


Needless to say, I'm not sure what to think.

At least they are all negative. If it were me that was suspicious about the numbers, I would get out my calculator and do the math for the ratios. I'd do it, but my brain isn't fully functioning yet. Maybe in a few hours I can do that for you if I get some down time?

If all the tests come back negative, it would just mean not hughes syndrome, right? Could you still have sticky blood?

 

[drob31]

At least they are all negative. If it were me that was suspicious about the numbers, I would get out my calculator and do the math for the ratios. I'd do it, but my brain isn't fully functioning yet. Maybe in a few hours I can do that for you if I get some down time?

If all the tests come back negative, it would just mean not hughes syndrome, right? Could you still have sticky blood?

Could be seronegative. My cyrex test showed I was positive for them, so of course it's like everything else; clear as mud.

 

[Strawberry]

Don't you love it when that happens??? Are there doctors that specialize in this area that could un mud the conflicting tests?

 

[drob31]

Don't you love it when that happens??? Are there doctors that specialize in this area that could un mud the conflicting tests?

Yeah, I'm not sure what to think. Positive on one test, negative on a different one.

 

[WillowJ]

They say it's not unusual for ANA to fluctuate and I've even had one or two come back negative in the middle of multiple others coming back high, so maybe other kinds of autoantibody tests can fluctuate, too.

Also, labs can make mistakes, and one could be a mistake.

Thirdly, ANA is not splendidly accurate as best I understand (same patient, same time, will vary from lab to lab, says a recent paper), and possibly the other tests may not be, either.

 

[Strawberry]

They say it's not unusual for ANA to fluctuate and I've even had one or two come back negative in the middle of multiple others coming back high, so maybe other kinds of autoantibody tests can fluctuate, too.

Also, labs can make mistakes, and one could be a mistake.

Thirdly, ANA is not splendidly accurate as best I understand (same patient, same time, will vary from lab to lab, says a recent paper), and possibly the other tests may not be, either.

I have always wondered about that too, the discrepancies between lab technicians. I have had three positives by labs that were ordered by my doctor, they are all ran through Quest. Taken over the last 8 years. The only negative was the one that the rheumatologist took at the PolyClinic. But she was looking for lupus markers? Was it the same lab technician at the Quest labs over all 8 years that found the speckled positive pattern? It is so hard to say.

 

[AndyPandy]

Latest test results show speckled pattern 1:640. Last time was 1:320 and time before was 1:640. I get them tested every 12 months or so.

Will speak to my GP about it next time I see him but so far no one seems to be very interested in these results.

 

[Gingergrrl]

Am not sure if I replied earlier in this thread but I have an ANA speckled pattern of 1:160 on latest test. I was told not to worry about it but in light of the five million antibodies that I am now positive for, I am certain that it means something.

 

[kangaSue]

Latest test results show speckled pattern 1:640. Last time was 1:320 and time before was 1:640. I get them tested every 12 months or so.

Will speak to my GP about it next time I see him but so far no one seems to be very interested in these results.

I thought it was the practice in Australia to also do an ENA panel when you had a positive ANA. I don't have ME/CFS but my G.P. ordered a (bulk-billed) ENA test for me to rule out Sclerodema, Sjogren's, SLE or a connective tissue disorder even without a positive ANA after an autonomic function test panel showed I had Restricted Autonomic Neuropathy on top of chronic GI dysfunction and OH.
https://labtestsonline.org/understanding/analytes/ena-panel/tab/test

 

[AndyPandy]

I had a panel done a couple of years ago which apparently didn't disclose anything noteworthy. I'll see if my GP will authorise another.