???
Hi All,
I hope someone can help,
I finally got copies of tests that were done over a year ago, and this is from a Rheumie who said if the tests were negative she does'nt want to see me again, but surely there is something going on, :o
ANA pattern speckled 1/320
Nucleolar
cytoplasmic speckled
Primary pattern is speckled to a titre of 1/320.
The secondary ANA is nucleolar pattern, nucleolar antibodies are most commonly seen in patients with sclerderma, SLE and raynauds phenomenon.
This next section i have not got a clue what they are saying, help on this one would be very nice, TY.
The primary indirect immunoflurescence pattern shows speckled staining of the cytoplasmic constituents. This may represent antibodies to ribosomes, endosomes, lysosomes or GW bodies or mitochondria.
ENA results
Sjogrens Syndrome A/Ro 60 Antigen high positive.
ENA interpretation,
This patient has autoantibodies to SS-A/Ro 60. These antibodies are most commonly seen in Sjogrens and SLE. The antibodies may also be seen in neonatal lupus and subacute cutaneous lupus.
If anyone can tell me exactly what is going on.
Not one of the Dr's i've seen has told me anything about these test results, to me there is clearly something going on, what i don't know.
I'm getting very upset with these Dr's.
Many thanks for any info given.
Sorry I can't help with the test results. All my blood work is negative.
Maybe you should take those test results to a better doctor. Maybe at a teaching hospital.
Just a suggestion. Hope you get some answers soon.
Kristine
Hi,
Yeah i think i'll have to push my Family Dr, but he has not been any help at all, just keeps shoving me from pillar to post and i'm not being told anything. And yet i feel so sick alot of the time, I do have Discoid lupus but i have no meds to help at all.
The pain clinic put me on Tramacet/Tramadol and i ended up in the Er with a reaction to it, so now i only take Advil for the pain.
It's just so frustrating, Grrrrrr.
Hi There:
Stay calm. Must be frustrating. I can't imagine the doctors won't tell you what is going on. From the test results, you clearly have auto-antibodies. ANA is quite specific for lupus. You probably have other antibodies going on also- not sure exactly to which disease. Sometimes, the serological tests and clinical symptoms can be quite confusing, especially in autoimmune diseases.
How about consulting a clinical immunologist rather than a rheumatologist? Clinical immunologists are more open minded, and not just focused on rheumatoid factors, using steriods. Most medical centers have dept of immunology.
Where do you live?
Pegasus
Hi,
I live in Canada, southern Alberta.
Yes i've thought about doing that as well.
Thanks.
Hi blacksox66,
My ANA was 1:1280 and my SS-A (Ro) was 8.0 which is a high positive on the scale the lab that did the work used. My rheumy said that negative was < 0.02. It appears that the lab that did your tests used a different scale.
She diagnosed me with Sjogren's Syndrome (and possibly lupus) on my second visit with both the ANA and SS-A being high positive... no lip biopsy needed.
I am not a doctor, but it appears that your tests indicate Sjogren's. Your test results certainly aren't negative - will you be seeing your rheumy again?
Good luck!
Hi Nans,
The Rheumie told me that she does not want to see me if my tests were negative, and clearly they are not but neither i or my Family Dr have heard from her in over a year.
And my previous tests i have had done show almost the same and the internal medicine Dr told me nothing as well, and has not seen me for over 2 years.
The pain Dr i see is for RA pain and only treats the pain, will not diagnose.
I just feel as though they don't care.
Bear in mind that doctors will not/should not make a diagnosis on bloodwork alone. Although ANA is usually high in Lupus, if you don't meet the criteria, symptom wise, you don't have Lupus. Same with Sjogren's. No doctor worth their salt will discount an autoimmune disease like Sjogren's based only on bloodwork. :)
Hi,
I have many symptoms that meet both criteria for lupus and Sjogrens.
What gets me is none of the Dr's are doing further testing to find out exactly whats going on.
An ANA test is a general test for autoimmune activity, but it doesn't point to any specific illness. Anti-SS-A/Ro is associated most commonly with Sjogren's and lupus, though it is sometimes seen in other illnesses.
Does your lab report indicate an anti-dnaDS blood test (or anti-DNA)? That test is much more specific for lupus than the ones you mentioned. What about RF (rheumatoid factor)? It's common with rheumatoid arthritis which also has a lot of the same symptoms as Sjogren's and lupus. These blood tests might narrow things down.
It sounds like you're going to need to start taking control with your rheum, calling and requesting an appointment (or, at the very least, a phone call) and perhaps further blood tests. You'll definitely want to discuss your symptoms and treatment options.
Basically, what really matters is your symptoms and treatment more than a label. The treatments for lupus and Sjogren's are pretty much the same: prednisone for flares, plaquenil for disease management, and then additional meds as necessary (such as Evoxac or Salagen to increase saliva and Restasis to increase tear flow). Anyone who tells you that there is no treatment for Sjogren's is terribly out-of-date.
Hi Dragonflyc,
I do have RA.
All the other tests have come back negative, normal or borderline low, except it said i'm slightly anemic but having never been told this as the tests are over a year old.
The Rheumie has not contacted me or my family Dr with any info as to whether i should have more tests. and she said she did'nt want to see me again, i even sent her pictures of my rashes from the sun, not a word. She got very huffy with me when i contacted her office to see if they had the test results back and could i have copies to which i was told no, i had to pay out of my pocket to get them, as my Dr would'nt give them either.
What gets me is i don't even get the chance to ask questions.
blacksox66,
Maybe you need to go to another rhuematologist?
Blacksox, keep in mind that you "hired" your dr/rheumy and you can "fire" them. I know it's a pain, but if you can't get any help from your current docs, it sounds like your only recourse.
There are no specific tests for Sjogren's. The ones most of us have had (ANA, SSA, SSB) can indicate there's inflammation going on if they're elevated, but not the cause of the inflammation. Your symptoms also need to be included when figuring out what your problem is, so you need a doctor who is familiar with Sjogren's -- not every rheumy is, sad to say. Sjogren's is also a difficult disease to diagnose because so many of the symptoms can be from something else. The good news is that the symptoms can be treated, so I hope you will get a good doctor soon.
There is good information on the Sjogren's Syndrome Foundation website, though some of it is available only to members. Another thought: there are Sjogren's support groups throughout the country. If you contact the Foundation and tell them where you live, they might be able to give you the name of somebody in your area who could let you know who the Sjogren's-knowledgeable doctors are.
Prairie gal
Thanks Prairie Gal,
I have been looking for another Dr but not many of them are taking on new patients, and the nearest Rheumie is 4 hours away and i have phobias about traveling, so it really takes a lot for me to go to the appointments that are out of town.
I have a eye appointment in july so i am going to ask if he can do the shimmers test for me.
I had to give up work cos of all the pain.
I really don't know if any complaining will do any good, i'm so fed up with pushing for it and getting now where.
Hi,
Here are the tests she ran a year ago,
CBC
GC
ALT
CK
CREATININE
GGT
ALBUMIN
C-REACTIVE PROTEIN
MACROSCOPIC ( URINALYSIS )
i'm sure there were more ticked off, but i know there are more tests she could have done.
I really am at a loss as what to do, wait til something serious happens or keep pushing to find out exactly what's going on, as i am not getting any better.
I have given all the Dr's complete list of symptoms that i have all the time and what comes and goes, The Dermy even said i had 5 if not more of the criteria for lupus or Sjogrens and yet they still do nothing.
It's scary to know that i may have to wait til i'm really sick before they do anything.
SO SORRY FOR THE RANT, i just don't know what to do for the best.