So frustrated

[RJN929]

Hello Everyone style_emoticons/<#EMO_DIR#>/wavey.gif

I just came from my appt. with my rheumy, and got results of my lab tests. He said that I did not test positive for Lupus. A couple of things came back a little abnormal.

Anti-Nuclear AB Positive
ANA Titer 1:80
ANA Pattern Speckled
Sed Rate 20 ( I think that is just borderline high)
He said my vitamin D was low & my WBC was in the low range. So now what? I still continue to have so many symptons. So much pain & fatigue. He is putting me on Naprocin for joint pain & if that doesn't help he will put me on Fibromyalgia meds (Last visit he said I tested positive for fibromyalgia). I have rashes, mouth & nose sores, muscle weakness, terrible memory and the list goes on. The chest inflammation is better as well as the heart symptons. Does anyone have some words of advice. style_emoticons/<#EMO_DIR#>/overhere.gif I have read that the lab test don't always come back positive but you can still have Lupus. If that is the case how do you get diagnosed?? Do you have to be in a full blown flare to test positive? It took so long to get in to rheumy I was not @ my worst when I got in there. Thanks to all for your help. style_emoticons/<#EMO_DIR#>/Thanx.gif

Ronee

[halfpintfl]

style_emoticons/<#EMO_DIR#>/wavey.gif Hi Ronnie, I think that it's time for you to let you're Rheumy
know that you are an edicauted patient that does her research.
First, you were right, there is no one blood test that can say "yes"
you have lupus, or "no", you do not have lupus. The blood tests are
used as a guide to help tell the dr. in which way to go. He puts them
along with your symptoms, and pretty much dx you from that. And
I have never heard of Fibro being diagnosed from blood tests. A
Rheumy has to do a physical exam, while you are undressed, touching
the front and back of your body at certain points. If he gets the results
he expects, then he dx Fibro. I hope this helps you some. Oh, you asked
how do you ever get dx ? with patience, patience, patience, and a few
times we have a good short cry.

Be well and keep posting. style_emoticons/<#EMO_DIR#>/cool.gif

P.S. if you need something else, you may PM me.

[RJN929]

Sorry If I was unclear on the Fibro. He did not diagnose that through lab work, he did an exam during my first appt. & said I tested positive for it then.

[Lily]

Hi Ronee,

Its very unusual to get a diagnosis of Lupus after first investigation with a Rheumy unless your blood work screams it. You do have a positive ANA, albeit low titre, and he's probably going to watch that and keep monitoring you? Thats the usual drill at this stage of investigations. However the low white cell count can be common in Lupus also, and your sed rate is slightly raised by my countries guideline as well. What was his explanation for that? these things do not come under the realm of Fibromyalgia, however the fact he is trialling you on an anti-inflammatory med to see if it makes a difference is something they often do in early stages of most Rheumatic diseases.

Was it actually a board certified Rheumatologist you saw though? Because in an earlier post you stated <div class='quotetop'>QUOTE</div><div class='quotemain'>I have made an appt. with an Osteopathic Dr. who specializes in Rheumatology[/b][/quote]. It might be worth seeking a second opinion or at least having a heart to heart with him about your blood abnormalities and what he thinks is causing them. They certainly arent caused by Fibro, but they are also not specific to Lupus. Its ongoing investigation and your overall criteria you meet that will assist in diagnosis. He did take a full history and you did mention all the other things that have occurred over the years?

Persist and ask more questions, its the squeaky wheel that gets oiled every time. If its not Lupus then it may well be some kind of Rheumatic disease, but not that definitive right now.

love
Lily

[laker]

Ronee,
I sympathize with you - my gp said sometimes it takes time for a disease to evolve to the point where it can be identified. That is small comfort but may help you have patience. Clearly something is going on since your tests are not normal. Think of that as a positve step toward a dx. - maybe it would help to have a 2nd opinion. Hang in there and press on. You are getting closer to knowing what is wrong - style_emoticons/<#EMO_DIR#>/hugbetter.gif don't give up.
Laker

[RJN929]

<div class='quotetop'>QUOTE(Lily @ Jul 12 2006, 03:32 PM) Quoted post</div><div class='quotemain'>
Hi Ronee,

Its very unusual to get a diagnosis of Lupus after first investigation with a Rheumy unless your blood work screams it. You do have a positive ANA, albeit low titre, and he's probably going to watch that and keep monitoring you? Thats the usual drill at this stage of investigations. However the low white cell count can be common in Lupus also, and your sed rate is raised as well. What was his explanation for that? these things do not come under the realm of Fibromyalgia, however the fact he is trialling you on an anti-inflammatory med to see if it makes a difference is something they often do in early stages of most Rheumatic diseases.

Was it actually a board certified Rheumatologist you saw though? Because in an earlier post you stated <div class='quotetop'>QUOTE</div><div class='quotemain'>I have made an appt. with an Osteopathic Dr. who specializes in Rheumatology[/b][/quote]. It might be worth seeking a second opinion or at least having a heart to heart with him about your blood abnormalities and what he thinks is causing them. They certainly arent caused by Fibro, but they are also not specific to Lupus. Its ongoing investigation and your overall criteria you meet that will assist in diagnosis. He did take a full history and you did mention all the other things that have occurred over the years?

Persist and ask more questions, its the squeaky wheel that gets oiled every time. If its not Lupus then it may well be some kind of Rheumatic disease, but not that definitive right now.

love
Lily
[/b][/quote]

Hi Lily

His office told me he was a rheumatologist and that is what everything says (business cards, sign on the door even when I looked him up to make sure he was on my insurance). Do you think because he is a DO it is different. I really don't know enough about it. How do I find out if he is board certified? I really appreciate your response. I go back in 6 weeks & I will definately be squeakier. Thank you

Ronee

[Lily]

Hi Ronee,

I dont know a great deal about how your system works because I'm in a different country. Hopefully Karen or someone else will come along who does.

In the meantime this may help a little:

http://www.rheumatology.org/directory/geo.asp

love
Lily

[RJN929]

<div class='quotetop'>QUOTE(Lily @ Jul 12 2006, 04:58 PM) Quoted post</div><div class='quotemain'>
Hi Ronee,

I dont know a great deal about how your system works because I'm in a different country. Hopefully Karen or someone else will come along who does.

In the meantime this may help a little:

http://www.rheumatology.org/directory/geo.asp

love
Lily
[/b][/quote]

Thanks lily this is him

Christian R. Dequet, DO
Los Robles Medical Center
1000 Newbury Rd Ste 285
Thousand Oaks, CA 91320
Ofc: 805-480-9748
Fax: 805-480-9749
Time Spent: Patient Care, Teaching
Disciplines: Adult Rheumatology, Internal Medicine
Locations: Practice-Solo
Member Type: Fellow Member

[Lily]

Ok well that sounds fine then, just ask about your bloods and whether he's thinking there's something going on with them being abnormal. Has he tested your urine? Thats something sometimes overlooked and should be done on possible lupus patients to make sure there's no problem there. I hope you get some relief from the anti-inflamm it should help some of your pain..........and hang in there, as long as he sees you for follow-ups, continues testing and treats your pain etc. then it should all fall together.

love
Lily

[raggedyann1]

RJN,

It does sound like he is a rheumatologist by the standards used in the USA. However most rheumatologists are not lupus specialists ( According to Dr. Wallace in his book The Lupus Book) only 20% of all rheumatologists in the USA are considered lupus specialists. I personally don't have knowledge of your doctor but I do live up the coast about 1/2 hour from you. Sed rate of 20 is considered normal 21 is high. My rheumy only counts mine as significant when it is over 20. I have only been over 20 3 times in the last 3 years and never in the 7 years before my remission. I was diagnosed in 1988/89 (longish story). Your ana would be considered negative by the majority of rheumatologists. I am wondering if he even ran the ena panel on you, or the complements or the Lupus Anti-Coagulants. Many doctors will not run those blood tests if they consider your ana negative.

Have you looked over the lupus symptoms and criteria post at the top of this forum? Chest problems and heart issues are usually enough for a good doctor to delve a little deeper. Those are more significant than the mouth sores would be. Also the memory problems could be significant but extreme pain like accompanies fibromyalgia can cause issues with memory. Not the fibromyalgia itself but the pain it causes.

You have a right to copies of all your medical records including the recent lab tests. I would suggest getting copies of everything to see exactly what other blood tests were run. There are top lupus doctors in Los Angeles and they could give you an evaluation. Just be prepared that they won't take the 1:80 lupus titer seriously without other significant health issues like muscle weakness, heart problems, lung problems and memory issues.
Which is why if you could get your GP to run whatever tests the rheumatologist may have missed, that could make it easier for a 2nd opinion.

If you DON'T have HMO insurance Dr. Daniel Wallace outside Beverly Hills is considered one of the tops in the world. He is my rheumy and re-diagnosed me after my remission. I have few positive bloods but my ana is 1:1280. If you do have HMO insurance UCLA accepts most HMO's and I believe USC does as well. I am not sure who the lupus specialists are at either of those hospitals but can give you some help in making sure you get a lupus doctor.

Let us know what you find out.

Take care,
Karen

[helloos]

HI there.

I agree with everyone else that you should get a second opinion. When you do this, make sure that you find out if this doctor has patients with Lupus. My second opinion is who I stuck with. My first rhemo said he thought lupus, and when I picked up my records he said "highly suspects Lupus but will wait until something more dramatic happens" I was mad at the one, wait until it effects my organs !! I went to my second rhemo and he was very thorough and started treating me right away.

You do have some blood work abnormalities and I would get the paperwork and results and go for that second opinion. It may be well worth it.

Good luck.

[RJN929]

<div class='quotetop'>QUOTE(Lily @ Jul 12 2006, 06:36 PM) Quoted post</div><div class='quotemain'>
Ok well that sounds fine then, just ask about your bloods and whether he's thinking there's something going on with them being abnormal. Has he tested your urine? Thats something sometimes overlooked and should be done on possible lupus patients to make sure there's no problem there. I hope you get some relief from the anti-inflamm it should help some of your pain..........and hang in there, as long as he sees you for follow-ups, continues testing and treats your pain etc. then it should all fall together.

love
Lily
[/b][/quote]

Hi Lily

Yes he tested my urine & that was all o.k. Can you tell me why sometimes people can test positive & then the next negative? Does it have to do with having a flare or not? Just trying to understand all of this. Thanks.

Ronee

[Lily]

Hi Ronee,

Thats the million dollar question (and no-one knows the answer I'm afraid). In my early investigations I wondered the same thing, should I have the tests done on a day where I felt atrocious, would it make a difference? I soon discovered there were times I felt really bad and my tests were ok, other times I considered I felt ok and they came back abnormal. But in those with Lupus it sometimes for some reason show up spasmodically at first. With no treatment to alter the disease mine did eventually stay positive.........lots of things can cause a positive ANA though. It's diagnosed as much with criteria as it is with abnormal bloods. Other antibody tests should be run if they havent, and in my case the complement levels became very low even before the ANA stayed positive.

Speak with him when you go for follow up and see where he's at with it. Make sure he's run all the tests he should have and take it from there. If you dont think he's given you proper evaluation or you are uneasy with his stance then by all means go and seek another opinion. I did. And whilst I went back to see the original guy and remain with him to this day, it was well worth the exercise.

love
Lily

[RJN929]

<div class='quotetop'>QUOTE(Lily @ Jul 13 2006, 03:48 PM) Quoted post</div><div class='quotemain'>
Hi Ronee,

Thats the million dollar question (and no-one knows the answer I'm afraid). In my early investigations I wondered the same thing, should I have the tests done on a day where I felt atrocious, would it make a difference? I soon discovered there were times I felt really bad and my tests were ok, other times I considered I felt ok and they came back abnormal. But in those with Lupus it does for some reason show up spasmodically at first. With no treatment to alter the disease mine did eventually stay positive.........lots of things can cause a positive ANA though. It's diagnosed as much with criteria as it is with abnormal bloods. Other antibody tests should be run if they havent, and in my case the complement levels became very low even before the ANA stayed positive.

Speak with him when you go for follow up and see where he's at with it. Make sure he's run all the tests he should have and take it from there. If you dont think he's given you proper evaluation or you are uneasy with his stance then by all means go and seek another opinion. I did. And whilst I went back to see the original guy and remain with him to this day, it was well worth the exercise.

love
Lily
[/b][/quote]

Thanks Lily

You have been very helpful & patient!!

Ronee