[MelanieBlue]

I want to cry. No, I am crying. What in the world is this? My first tests indicated a positive ANA, borderline dsDNA and a positive RNP. With all of my symptoms, I went to a rheumatologist. He told me that he suspected that i had lupus, but wanted to run the tests again to make sure that they were all positive again. Well, every single one is now negative - every single one. I want to cry. I finally felt like I had some hope (meaning an explanation).

Of course, I am stupid and went and got my results before my appointment with him. I am impatient like that. Now, I am sitting here with all of these strange new results - with none of my previous results being confirmed. How could all three have been wrong??

Now, my stupid self gets to sit here for a week and wonder.....

Do these mean anything to anyone? These are only the abnormal results.

WBC 10.26 - high
RBC 5.28 - high (wtf?)
MCH 24.8 - low
RDW 20.5 - high
lymph % 12.7 - low
neut% 79.3 - high
neut 8.14 - high

RBC morphology - 1+anisocytosis
1+burr cells

CPK 30 - low
INR 1.24
PTT 43.4 seconds - high
PTT-LA 45 sec - high
hexagonal phase confirmation - positive

I am so terrified that he is going to now tell me that there is nothing wrong with me - and I'll be back to feeling crazy again. It feels so messed up hoping that they find something. I really hate this.

Thanks for letting me vent.

 

[MelanieBlue]

...and just because I feel like talking to myself - and if it might be of any relevance at all - here are the results from the immunology. Again, these are all considered negative. The normal ranges are in the parenthesis.

ANA

 

[Pink Pearl]

Mel, your results are not all normal. Also, if your doctor did not do this, he needed to point this out to you. Lab values do not always show how you are feeling. You can feel fine and your values are in the cellar, and, as you do now, feel like garbage and your values look more ok.

Do not feed into this head game. Go with how you feel, NOT what some lab value showed. I don't see any ESR or CRP. For me, those are a LOT more accurate as to what is going on.

What the LFA has found helps a lot of people is to keep a journal as to how you are doing day to day. You can take it to your doctor and go over it with him/her. Go with that. If you are having nausea, talk to your doctor about it and ask for something to get you thru it. For those who advocate to not use "drugs," I reply that if God did not want us to use the beneficial medications then He would not have allowed them to be created. Idealistic, sure, but realistic too.

The LFA sells journals, but you can use any blank book. I found that keeping a journal at the early stages of lupus helped me to let go of the problem condition. Once it was on paper, I didn't have to keep remembering them.

If you and your rheumatologist are not seeing eye to eye, PLEASE remember that there are a LOT of great doctors out there. You do not need to stay with an unsympathetic jerk. I fired 3 rheumatologists before I landed with the doctor I have been with for 16 or so years now.

You are not alone in this journey. There are people here who are willing to listen and help if we can.

Don't rule out antidepressants if needed. They can give you a better night sleep. They help to relax the junction of bone and muscle/tendon. Thus you get a better REM sleep and are more rested in the morning. There are other benefits to taking them. Maybe not now, but don't rule them out totally either.
Good luck,
Sally

 

[MelanieBlue]

Thank you Sally. I haven't even seen the doctor again. I had the blood draw last week, but my next appointment isn't until next week. I don't do well waiting three weeks for results, so I called and asked for them and picked them up myself. So, mostly, I feel stupid for not waiting and letting myself get wrapped up like this.

I just wanted to see those previous results confirmed, so that i could move ahead with some treatment. Instead, like a goober, I wound up with more questions. I think I made my own wait more difficult.

I don't see anything with the exact abbreviations that you mentioned. There is a sed rate with a very normal looking 6 - normal range of 0-20. THere is a C3 and C4 complement, which also look very normal at 103 and 33.0,respectively.

Thanks for your kind words. I am just more frustrated at myself for being impatient. Maybe this will be a lesson to me. So, now i wait until next week, when I see him again. I just was floored when all three came back totally normal. I maybe expected that one might be wrong - but all three, sheesh.

 

[cath]

HI Melanie,

I'm sorry that your bloods aren't playing ball. I understand how frustrating that is - I'm also almost always negative too, and even though my doctor is brilliant and treats me anyway, it is that element of doubt that a nice positive blood test would remove.

When were your bloods tested? Were you on prednisolone at the time? If so, that could well be the reason why they reverted to normal.

The fact that the pred worked so well for you is good evidence that there is real inflamation causing your pain. So, the doctor was almost certainly right that you do indeed have lupus, and the negative bloods this time are just a glitch. If your rheumy is a good one, he won't dismiss you completely just because of the negative ANA etc.

As Pink Pearl says, your bloods aren't normal anyway - it looks like your clotting is out, and whilst many of the auto antibodies were officially 'negative' they were still detected, so I would not be dismissing them as 'normal'.

Maybe it is a good thing you know the results now. You have time to compose yourself and go prepared to the appointment. Make sure you communicate clearly to the rheumatologist that the prednisolone was a miracle cure for you, and that the stress and ?fluorescent lights at work triggered a relapse immediately. Both these things point to a physical cause of your problems. It isn't all in your immagination.

I can completely understand your apprehension regarding how the rheumy will react. Be strong, and plead your case to him. It would be a good idea to take someone with you for moral support. A good rheumy won't dismiss you, but remember to be your own advocate too and fight for treatment.

X C X

 

[cmfinnis]

Hi Melanie,

Don't cry, have a hug . .....
Yes, I do understand how you feel, it is awful feeling so sick and not knowing what's wrong and not having a 'label' to put on it yet. .. .

However, don't despair, I think your bloods do show a few things that do point to autoimmune disease

1) low lymphocytes - this is found in SLE and is a criteria
2) your hexagonal phase confirmation positive is a lupus anticoagulant test - this means you may have Hughes syndrome or APS which is a pro-clotting problem commonly found in lupus patients or it can be found on it's own. This is confirmed by getting another positive result in six weeks time. Then the treatment is aspirin if you haven't had a clot, or warfarin if you have.
3) Burr cells can mean you have some kidney issues - maybe but not necessarily as they can also be found artefactually in badly taken blood samples. So this will need to be looked into.
4) Some of your other parameters suggest to me you're likely to be a bit iron deficient if not actually anaemic yet so you might possibly benefit from some iron. However, a more specific blood test to do would be ferritin.

I hope this helps a bit. Immune blood results are highly unreliable things. As are blood results in general. A good doctor should treat the patient NOT the blood results. If you find this not happening, change your doctor!

Take care of yourself now,

Cathy x

 

[LolaLola]

Hello Mel,
Everything you have been told here is dead right.
I feel very strongly about this as I had negative results for years. Negative results do NOT mean you are not ill or are less ill than people with positive results. I have seen people with negative results who are very sick. I was already being treated before my bloods became positive.
I hope you can sort this out at your next appt.
x Lola

 

[MelanieBlue]

Thank you everyone for helping to make me feel a little less crazy.

I am anemic. I have been on iron for about two months. My last ferritin level was a 1 - so that's pretty darned low. lol I think my iron was up to a 10 at last count. (I think I started at 4)

I wasn't on prednisone at the time these were taken. At this appointment, he put me on the prednisone to help my pain - and boy, did it. I told my family that I never wanted to be off of it. lol He will certainly know hat it helped me a great deal - although it did give me dreams about Ty Pennington, which was a little odd. lol I may choose to keep that little detail to myself.

I have only seen this doctor once, and he has been recommended once by someone here and once by someone at work. I have only heard good things, so hopefully he will hear me out and really look at things. Then, even if it isn't lupus, hopefully he can still help me - or find me someone who can.

I am going to start writing everything down each day. I had started doing that, but stopped.

 

[KarolH]

I think you have been given great advice here and nothing I can add but do write down things daily as that journel does come in handy.

Let us know how the appointment goes.:wink2:

 

[lin]

hi, sorry your feeling down, dont beat your self up, just wanted to say hang in there, it doesnt mean you dont have anything going on, believe me. just wanted to wish you luck and to say it can be a long road.

good luck Lin xxxx:hug:

 

[MelanieBlue]

So, I saw my doc today.....

Apparently, in doctor world, those labs are all normal. He didn't mention one single thing specifically. He does know that I am on iron supplements.
He is not going to do anything right now. He said that he wished that the labs came back positive so he could move forward with treatment.

He wants me to see the GI guy and do my scoping (yippee!) next week and let him do his thing. Then, I am to see the rheumy back in one month. He said that if I had anything major to call him.

He didn't explain how those tests could all suddenly be negative, or why they could have been positive. So, here I am again, with more stupid questions. I am trying not to get too worked up over it, since it makes me feel worse. I am just so beyond frustrated right now.

He did mention plaquenil. He mentioned it as my brain fell into the doctor's office abyss. I believe that he said that if the GI guy doesn't find anything and my symptoms continue, that it could help me, as it helps inflammation around the organs and such.

He didn't give me any official diagnosis, but on my check out sheet, it said connective tissue disease. So, I suppose that for now, it's something.

So, now I get to look forward to a camera down my throat and up my bum (don't worry, different cameras, I asked - lol). Then, I guess that I will take it from there.

Thanks so much for your support through this. Just hearing some validation from people who understand, helps you to not feel quite as crazy. Sincerely - thank you.

 

[Katharine]

Hello Melanie,

It sounds like your appointment went relatively well and that you are being listened to and taken seriously.

The doc is obviously considering a connective tissue disease (of which lupus is, of course, one) and people can often be "diagnosed" with Undifferentiated Connective Tissue Disease when there aren't enough criteria to give a firm diagnosis of one particular disease but that clinical signs etc. suggest that that is what is going on. That diagnosis then means that you get treatment (the same as you would for lupus) but you are not officially diagnosed with lupus (an advantage for certain things like insurance and mortgages...).

I hope those scopes are not too dreadful (the throat one is fine - haven't had the other).

Thanks for updating us,

Katharine

 

[LolaLola]

Hello Melanie, No you are not going silly. We have heard stories like yours so many times over. Katherine has put everything very well for you. It is good that he may consider Plaquenil. If I were you, and if this is relevant, I would sort out anything like Travel Insurance, Medical Insurance,Life Insurance, Mortgages now-while you are still not officially a Lupus patient. This is for the reasons Katherine mentions. Some of us are stuck in the position where we either can't get these or have to pay huge premiums.

keep your chin up. He is not saying you have nothing wrong.
x Lola

 

[MelanieBlue]

Thank you so much. I needed to view things through a different lens. You gave me new perspective. I guess that I was feeling like I had seen yet another doctor who couldn't help me. In reality, I think it was probably quite the contrary - hence him talking about plaquenil. He is listening and he does acknowledge that I am really feeling what I am feeling. Otherwise, he would have told me to get lost.

I wish you all could know how much your words have altered my state right now. Thanks for the verbal kick in the keester.

 

[denalirat]

Melanie --

Do exactly as Lola said!! Sort out ANY insurance issues NOW. When I was diagnosed verbally at the Mayo Clinic, they only officially wrote "connective tissue disease" at the time for that exact reason. They were trying to give me a chance to get my life in order because once they write down SLE on the page, it is pretty hard to go back. Lots of insurance won't accept you...it changes everything.

My diagnosis was "officially" changed to SLE when I moved to a new city and was reevaluated by a new doctor (who also had to fill out some paperwork for me for work). He said that no matter if it was UCTD or SLE...the treatment would essentially be the same, but that in his professional opinion, I should be considered to have SLE. He explained that in the medical world, what one doctor calls UCTD another might call SLE and another might be unsure about. It is a very wishy-washy part of the doctor world...this connective tissue stuff. He said the most important part is that you are being given the proper treatment...and I agree with that completely.

Good luck!
kit