[mikandbor]

Hi,

I posted a little while back with my ongoing symptoms (wont rehash here but they are below on another thread). Anyhow currently being seen by Neurologist had MRI (normal), EMG (within normal limits) and am awaiting my EEG results (not sure why that was ordered but perhaps because of my transient "fog" and CNS problems). Anyhow my anti SL came back Greater than 200 (yes I am on coumadin for blood clots that showed up out of nowhere in my lungs but apparently per research only heparin interferes with that test?) also got back ANA results (unequivical titer 1:40 although 3 years ago when I was really sick this was absolutely negative) also athe reflex titer states Positive and the ANA pattern is speckled. The neurologist put me on neurontin today for both the muscle problems and migraine prevention. I am a nurse and went back to my PCP (also my boss) and brought her the ANA results and she seemed a bit surprised that the neuro didnt discuss this with me more - I am to return in 6 weeks after starting the neurontin. I guess I am even more confused given my history and current issues (again please read previous post). Suggestions? Thoughts? My PCP said she will research some more overnight - i guess I was hoping for something from the Neuro but when I asked about the positive tests she just said "we can retest those again later".

 

[LolaLola]

I am sorry, my brain is simply awful at the moment so I cannot add anything useful. Just wanted to reply and say that I am sure someone with a working brain will answer you soon.
x Lola

 

[Katharine]

Here's a link to the other thread

http://www.thelupussite.com/forum/showthread.php?t=70497

 

[Katharine]

Hi, I'm not sure I can be of much help here.

Your ANA titre is very low and would not normally be considered significant for lupus at all so maybe that's why the neuro has not paid much more attention to it at this time.

The lupus anti-coagulant test is badly named in that it is not a test for lupus but for APS which you are obviously already being treated for.

It sounds to me as if the neuro has decided to try neurontin for your migraines and maybe other pains that you have as it can be helpful there too.

I would think that as you still don't seem to have any clear answers it would be well worthwhile going to see a rheumatologist as well as the neuro. My rheumatologist and neuro work vey well together but each one definitely has their area of expertise. Maybe your PCP could refer you to a rheumy, especially if she also feels that more explanation is needed.

Sorry I can't be of more help,
Katharine

 

[Lily]

Hi mikandbor

What is an anti SL test?

love
Lily

 

[Clare.T]

I don't know what the anti SL test is either but I seem to remember having already answered a similar post and asked same question. It seems to be something to do with tuberculosis or HIV/AIDS.

Clare

I answered on the first thread duh

Hello

I think you should find a rheumatologist who knows about lupus and APS.
The US Antiphospholipid Syndrome association has a list of Lupus specialists recommended by its members. The ACR has a similar list on its website.
I suppose your INR is regularly tested?
I don't know what the anti SL test is but it should be easy to find out what tests are influenced by being on Coumadin. If a doctor or pharmacist doesn't know then the manufacturers should. I have an idea that the "Lupus anti coagulant" clotting tests can't be done on Coumadin but I don't know about the anti cardiolipin testing.

APS can have a number of similar symptoms to SLE and of course to MS.
If MS remains suspect then its best to see an MS specialist.
The presence of LA and or anticardiolipins can be a criterion for a diagnosis of lupus regardless of ANA ditto high SED rate & low white blood cells.

As far as I know raised CPR isn't regarded as significant in lupus except as an indication of infection causing flares. I don't know anything much about diagnosing cardiac /atherosclerosis problems

That ANA titre isn't significant but if lupus is highly suspect I think many doctors would proceed with other lupus and connective tissue disease tests because the ANA isn't always raised or even present.

It is well worthwhile getting the most expert opinion you possibly can even if it means the trouble and expense of travelling some distance.
There are limits to what one can conclude oneself even if one is medically well informed. This is a highly complex disease

Best of Luck!
Clare