[KarolH]

Hi everyone,

I hope your all doing well.

I have my follow up appointment at the Rheumy doctor tomorrow since she gave me the dx of Lupus. When I was there last month she did more blood work.

My ANA titer, which I thought was normal was in fact negative. It looks like all of the other results were normal too yet it is hard to read the faxed report.

A negative ANA had me scratching my head. This was specifically the ANA titer.

In May that doctor did a ANA without a titer and that came back positive. The only other abnormalities that I have had with all of this blood work goes as follows...

ANA with out titer...positive
RNP.....Greater then 100
SCL-70...Greater then 100
Anticardiolipin Antibodies IgM...Greater then 100
B2 Glycoprotein...high but I do not remember the number.

I wish labs would give you a specific number instead of "Greater then 100".

Anyway, Maybe it is my personality but I have to admit that I am questioning the dx of Lupus.

Just want to know if this were YOUR BLOOD WORK......would you feel the same way I do?

My female intuition tells me that STILL the doctors are missing something.

Please share your feelings with me. I know your not doctors so that is why I ask for YOUR feelings here.

I am going to politely let the doctor know tomorrow that I am personally not sure this is Lupus.

I am such a black and white person, no time for gray and this part of my personality I just hate. Where can I find a new personality???:hehe:

 

[greenhaggis]

HI Karol,

Good luck tomorrow, let us know how its goes!

Have they done an anit ds-dna test - this is one that is more connected to Lupus (added to symptoms that finalised my diagnoses)!

Please remember though that perhaps you have been diagnosed on symptoms alone - that is possible! Just because your bloods dont show signs of Lupus does not mean you dont have Lupus!

Take care,

Lesley

 

[cath]

Hi Karol,

I don't think that anything we can say can cure uncertainty. It is a fact of life and regardelss of your diagnosis and treatment will remain a fact.

In regards to how valid a diagnosis can be without a positive ANA, it can be pretty certain. If someone has more than 4 ARC criteria, regardless of what they are, then the statistical chance that the diagnosis is correct is over 95%. And if I remember correctly you posted that you have 9 out of 11?

Also, antibody titres change. You have only been tested twice, and who knows how your bloods are going to change in time. To count as an ARC criteria, the ANA only needs to be positive once by the way, so having a negative reading doesn't cancel out the first positive.

I've had multiple testing (must be well over 10 times now) and in that time I've had an ANA of 1:80 twice and cardiolipin antibodies twice. Every other time they've been negative, and every oter antibody test has been negative too. I don't doubt I have lupus. The drugs help so much, and I had/have a long list of lupus symptoms I'm convinced that I need my rheumy and his treatment to keep on living a reasonable life:blush:.

Unequivocal tests are a positive skin biopsy, positive anti DNA, positive Sm. Not eveyone with lupus has one of these, and it is not needed for diagnosis.

I understand you have a lot of different conditions and it must be unsettling to wonder exactly what is what with your body. Also medical knowledge tries to be as scientific as possible, but there is a lot still to discover. At some point though, worry stops being a motivator and becomes a problem in itself.

All the very best with your appointment:blush:

X C X

 

[KarolH]

Have they done an anit ds-dna test - this is one that is more connected to Lupus (added to symptoms that finalised my diagnoses)

Yes and it was normal.

Thanks for the good luck wishes.:wink2:

 

[KarolH]

I don't think that anything we can say can cure uncertainty. It is a fact of life and regardelss of your diagnosis and treatment will remain a fact.

In regards to how valid a diagnosis can be without a positive ANA, it can be pretty certain. If someone has more than 4 ARC criteria, regardless of what they are, then the statistical chance that the diagnosis is correct is over 95%. And if I remember correctly you posted that you have 9 out of 11?

Also, antibody titres change. You have only been tested twice, and who knows how your bloods are going to change in time. To count as an ARC criteria, the ANA only needs to be positive once by the way, so having a negative reading doesn't cancel out the first positive.

I've had multiple testing (must be well over 10 times now) and in that time I've had an ANA of 1:80 twice and cardiolipin antibodies twice. Every other time they've been negative, and every oter antibody test has been negative too. I don't doubt I have lupus. The drugs help so much, and I had/have a long list of lupus symptoms I'm convinced that I need my rheumy and his treatment to keep on living a reasonable life:blush:.

Unequivocal tests are a positive skin biopsy, positive anti DNA, positive Sm. Not eveyone with lupus has one of these, and it is not needed for diagnosis.

I understand you have a lot of different conditions and it must be unsettling to wonder exactly what is what with your body. Also medical knowledge tries to be as scientific as possible, but there is a lot still to discover. At some point though, worry stops being a motivator and becomes a problem in itself.

All the very best with your appointment:blush:

X C X

Cath you always make so much sense of things that I find confusing and for that I thank you from the bottom of my heart.

Yes, I had 9 out of 11 of the criteria.

And honestly for me it is not worry but more confusion. My bad health issues started too many years ago for me to worry about much of anything at this point in my life.

The only thing I worry about is making sure I have coffee when I wake up in the morning.:wink2::rotfl:

Thanks for sharing YOUR story with me. Things are more clear to me now that I have read your post.

Your a GEM!

 

[greenhaggis]

I am in the minority having this and even more so not having kidney involvement that is more likely!

Again good luck!

Hugs Lesley

PS - I still have moments (75%) of diselief that I have SLE!

 

[KarolH]

I still have moments (75%) of diselief that I have SLE!

Hmmmmmm, maybe it is just human nature?:wink2:

 

[greenhaggis]

I think so!

Hey that must mean were normal!:hehe:

 

[KarolH]

I think so!

Hey that must mean were normal!:hehe:

Oh darling my mother would tell you that there is not one thing about me normal.:rotfl::rotfl::rotfl:

 

[greenhaggis]

Oh darling my mother would tell you that there is not one thing about me normal.:rotfl::rotfl::rotfl:

My husband says that all the time about me!

:lol::lol::rotfl::rotfl::rotfl::lol::lol:


Karol, I'm so glad we can have a laugh!

Hugs,

Lesley

 

[Maia]

I doubt my diagnosis from time to time still too I think it is part of human nature. I wonder if the doctor's have missed something too - & I think they did for a while with the whole Lyme mess.

For you, it seems pretty clear that you have something autoimmune going on. Clotting antibodies are pretty high - I would ask tomorrow about the possibility of APS and going on some sort of medication for that especially with your prior diagnosis of MS and so many other problems that could have been related to blood clotting abnormalities. It is fairly likely that a titre was actually run but just not reported on that first testing. Perhaps your doctor could get it.

The other two that are positive could point to MCTD or lupus. They can be positive in either disorder. Best wishes for a great appointment tomorrow. Let us know how it goes!

 

[Katharine]

Hey Karol,

I'm another person who went through years of a lot of pain and frustration because my ANA was always normal. It still is. The only thing that occasionally came up high was ESR and CPK but neither were "high enough" for them to be considered serious.

I have no doubt either that I have lupus and when I first came on here just after my diagnosis they were so many posts that I could identify with that it was suddenly like someone had turned a light on and explained so much frustration.

As my rheumy is rather bloods obsessed I was diagnosed through a positive skin biopsy. That started the wheels turning, the treatment etc. Since then neither my rheumy or any other specialist I have seen has ever questioned my diagnosis.

I did then have some blood tests linked to lupus very out (they were pretty unusual tests the rheumy hadn't done before) as well as extremely high anti-cardiolipin antibodies.

As someone else said, no one can ever remove the doubt. All these diseases are so complex. However, at the end of the day, we've got to let the docs do their job. They do, in most cases, know a lot more about it than us. The crunch for me is, do the meds help? And despite this last year, I have to say that they very definitely they do.

Sometimes the line between is it primarily lupus or is it primarily polymyositis is a bit vague for me as I have symptoms of both but, in the end, it really doesn't matter as both diseases are basically treated in the same way.

My mother had the same problem with bloods as I did for many years. She was less lucky than me because by the time her disease was found (dermatomyositis through muscle biopsy) she was in a very very bad way.

I think the doubt is normal. I bet there are plenty here who have been diagnosed for years who keep thinking 'nah, I don't really have that' or who "fear" someone suddenly taking their diagnosis away. Not to mention those (and I am one) who tend to kid themwelves with shovelfulls of denial and need reminding from time to time by leaving things too late (yep, I did that again recently - thankfully told off by a close friend and got to the doc before provoking a major flare through infection). Pretty normal I think after so many years of people insinuating it's all in our heads!

So, just go with the flow, be open to things but don't try doing the docs job.
hugs,
Katharine

 

[KarolH]

I doubt my diagnosis from time to time still too I think it is part of human nature. I wonder if the doctor's have missed something too - & I think they did for a while with the whole Lyme mess.

For you, it seems pretty clear that you have something autoimmune going on. Clotting antibodies are pretty high - I would ask tomorrow about the possibility of APS and going on some sort of medication for that especially with your prior diagnosis of MS and so many other problems that could have been related to blood clotting abnormalities. It is fairly likely that a titre was actually run but just not reported on that first testing. Perhaps your doctor could get it.

The other two that are positive could point to MCTD or lupus. They can be positive in either disorder. Best wishes for a great appointment tomorrow. Let us know how it goes!

Thanks Maja. The whole APS thing, well the doctor put me on a regular dose of aspirin daily but not a prescribed blood thinner. I am not sure why but I am ok with that.

 

[KarolH]

Katharine,

Thanks for your reply and sharing your story about normal blood test results.

I do appreciate it and it helps shed some light on my situation.

Maybe it is denial, probably is and I just do not realize it.

I am also going to see if the first Rheumy can find out if the positive ANA I did have came with a titer. Now I am curious so thanks Maja for suggesting that to me.

Your all so supportive and patient and I thank you.:wink2: