I Got My Blood Test Back! I'm Excited!

[poppetkazutaka]

So I called and the reason they were having problems?

They have Nielsen spelled Neilson. But I'm used to having flubs with my last name, so I was too nervous to care.

She read them off quickly and here they are...

Reflex something...negative...

Rhumatoid Factor...negative...

Lupus should be 180, is 203...positive...

C-Reactive Proteins...very high here...she said something about a "one point one something" but she was going very fast and from what I can see 1.1 isn't high so I don't think that was what she was saying?

Sed Rate is marked as high as well.

She's going to go over all this with you...do you want to move your appointment up?

Of course I said yes and mentioned my fingers and toes going tingly numb and the pain getting worse. I'm so freaking excited. Most people would be sad but I AM SHOWING stuff. OMG. I am so happy I danced once I was off the phone and was going, "They found stuff, they found stuff!" I even emailed my friend at work and was all, "YES!!!!!"

I'm not sure what it all means. Possibly that something is breaking down to set off a reaction to cause inflammation and going into my blood stream?

My appointment is next Wednesday at 10:30. I just hope I'm getting closer to a true diagnosis. This road has been so long and confusing.

[sue1234]

Congratulations of having an abnormal result!!!

I know, we are all weird wanting something to be abnormal, but that's only because we are so tired of hearing we are normal test/lab-wise, and yet can't live a normal life.

Let us know how you appt. goes!

[erik]

Cool. If one want's to be well but isn't, then one should want to test sick. It can be helpful to getting well which is a great goal. I'll toast to that!

[erikainorlando]

I think that is good! Had they not tested you for Lupus before?

Do you have POTS on top of Lupus...or did you test positive for POTS previously?

Was your onset after a virus?

Just curious!!

Erika

[firewatcher]

Hooray for you! It isn't an easy diagnosis, but it is so much better when there is a definitive dx to treat! All of a sudden you go from "crazy" to sick! I really hope they have treatments that help you. Congrats!

[juliegee]

(((((Poppet)))))

[poppetkazutaka]

I think that is good! Had they not tested you for Lupus before?

Do you have POTS on top of Lupus...or did you test positive for POTS previously?

Was your onset after a virus?

Just curious!!

Erika

I had never really been tested before, because the general doctor I had that said she was testing things and may have been falsefying my blood test results. I was diagnosed as 'borderline autonomic dysfunction' by Dr Zia, and self-diagnosed as possible POTS due to all the symptoms.

I started having problems after a car accident, and it always got worse after I had bouts of chronic infection, which is normal for me when I'm sick. I was always sickly, ever since I was a child, and it's hard for me to get rid of things because I'm stubborn for one and go to the doctor only when I can't stand it anymore, and for two, the normal antibiotics just don't clear things.

So for six years I've had worsening symptoms, the worst of which started after a viral infection in June-July 09, that caused a sinus infection that wouldn't clear. Then my gallbladder failed, my sinuses swelled shut, and after seven months and two surgeries I seemed to be okay with the exception of an extreme flare of this 'whatever-possible-Lupus-thing' I'm being affected by that's causing me to be in twice as much pain and the feeling of swelling without the symptoms, tingling\numbness in fingers and toes, flushing in the cheeks\nose, loss of appetite and thirst, sore throat, and exhaustion.

Whew... XD

[arizona girl]

Yea!!! When I saw your picture with that rash on your face. I said to myself that looks like the classic lupus butterfly rash. I'm up on lupus/mixed connective tissue because that was the first thing they tried to diagnosis me with 20 years ago, I had a positive ANA at the time, for years. Most of the lupus panel was negative though. So I didn't quite fit. I have also had elevated CRP's.

Really research the treatment plans, I'm sure they are better options now then, I had back then. Be careful of the steriods, prednisone, dexamethasone. They gave me that and planquenil. The steriods ended up giving me drug induced cushings syndrome. I blew up like a balloon, stopped menstruating. Whether those steriods caused my Polycystic ovarian syndrome/metabolic syndrome, High Insulin. I'll never no for sure, but at the very least it was like putting gasoline on a fire and caused me to become infertile. No Kids, biggest heart break of my life.

Make sure that they test your insulin levels and other endocrine hormones before they put you on that stuff, because at least then you have a baseline and if you go up from there you know it's the med's.

Hope my bad experience helps you get better treatment options.

But, amen I'm glad you finally know. Knowing what's wrong is half the battle to getting well. At least they know how to treat this one, though I don't think it is curable yet. Good luck with it all.

[poppetkazutaka]

Yea!!! When I saw your picture with that rash on your face. I said to myself that looks like the classic lupus butterfly rash. I'm up on lupus/mixed connective tissue because that was the first thing they tried to diagnosis me with 20 years ago, I had a positive ANA at the time, for years. Most of the lupus panel was negative though. So I didn't quite fit. I have also had elevated CRP's.

Really research the treatment plans, I'm sure they are better options now then, I had back then. Be careful of the steriods, prednisone, dexamethasone. They gave me that and planquenil. The steriods ended up giving me drug induced cushings syndrome. I blew up like a balloon, stopped menstruating. Whether those steriods caused my Polycystic ovarian syndrome/metabolic syndrome, High Insulin. I'll never no for sure, but at the very least it was like putting gasoline on a fire and caused me to become infertile. No Kids, biggest heart break of my life.

Make sure that they test your insulin levels and other endocrine hormones before they put you on that stuff, because at least then you have a baseline and if you go up from there you know it's the med's.

Hope my bad experience helps you get better treatment options.

But, amen I'm glad you finally know. Knowing what's wrong is half the battle to getting well. At least they know how to treat this one, though I don't think it is curable yet. Good luck with it all.

I know when I was really bad sick with the last bout of sinus infection they gave me some prednisone and it made me feel better. Best week of the past six years that I could remember! I'm already not planning on children because of the PCOS, and some things I read on the Lupus page regarding the high likelyhood of miscarrage with Lupus patients. I had already written off being able to get pregnant because I have a bum ovary, so the possibility that I can't hold the kid kinda makes it worse.

Good thing I'm not interested in getting a guy involved in all this mess either! :3

I'm just hoping that all the kidney problems I've been having doesn't mean it's moved there. From what I've been reading it's a bad sign? Like...it means that the Lupus is attacking the kidneys and that can be life threatening?

[dsdmom]

Lupus certainly can be life threatening. I hope they figure this out and get you on treatment asap. I have a friend who has lupus and even though they caught it and treated her it had affected her kidneys before they were able to start treatment. She had decreased function of the kidneys for years and then one day last year they just completely failed. She had to go on dialysis and eventually was able to get a kidney transplant.

I do not want to scare you, it's just that if you do have lupus it is indeed very serious and you need to be treated quickly. When do you see the doctor again?

[poppetkazutaka]

Lupus certainly can be life threatening. I hope they figure this out and get you on treatment asap. I have a friend who has lupus and even though they caught it and treated her it had affected her kidneys before they were able to start treatment. She had decreased function of the kidneys for years and then one day last year they just completely failed. She had to go on dialysis and eventually was able to get a kidney transplant.

I do not want to scare you, it's just that if you do have lupus it is indeed very serious and you need to be treated quickly. When do you see the doctor again?

I know, I've been reading and I'm trying not to think about it. I've been telling them for years it was something autoimmune and for the past six months I've been saying "my body is eating itself" and "I think I'm running out of time". But everyone thought I was nuts.

I've always -ever since I was a child- said I was going to die early. Lately I've said I've got until I'm 32. I hope I'm wrong but it's a plan at least!

I see the doctor next Wednesday @ 10:30

[Mary P]

Lupus certainly can be life threatening. I hope they figure this out and get you on treatment asap. I have a friend who has lupus and even though they caught it and treated her it had affected her kidneys before they were able to start treatment. She had decreased function of the kidneys for years and then one day last year they just completely failed. She had to go on dialysis and eventually was able to get a kidney transplant.

I do not want to scare you, it's just that if you do have lupus it is indeed very serious and you need to be treated quickly. When do you see the doctor again?

dsmom, If I were to be told this in a forum situation I'd be freaking way beyond upset. It is up to the doctor to advise a patient of any prognosis. I once advised a nurse sister not to tell a brother that his prostate cancer would spread to his bones and that was a very serious cancer. I told her , "You might as well put a gun to his head and pull the trigger. It's up to his doctor to give him good or bad news".That was 18 years ago and my brother is alive and well today.

In Oct 2008,when I was first told that I might have MSA, I joined a forum for that. I immediately got a few replies saying things like, "Poor you. I'm so sorry that you have to be part of this forum", and " My deepest sympathies. This is a horrible disease". I immediately 'signed off for good' because I didn't need to listen to 'doom and gloom'.

A few days ago I saw a 3rd neurologist. This is a N of movement disorders who's not completely sure it's MSA and has ordered tons more tests. I wouldn't have wanted to think that I have been dying slowly over the past 15 months had I believed that I really did have MSA. I'm not denying that something is seriously wrong but still, it's up to this new N to give a final diagnosis. He came highly recommended and from all he did for me on my 1st appt, I trust him and know he'll be the one to finally know exactly what's going on.

Mary P

[juliegee]

Poppet-

Chances are, you're going to have a long (and healthier!) life now that you're on the road to a DX and treatment plan. I know the dsmom is just showing her concern & trying to help, as is Mary P.

I think relying on your doctor (exclusively) may not be the best idea as it's taken MANY of them a really long time to get you to this point. It's good to do your own research, be persistent, and keep searching for answers- which you have done! Your story proves that it's sometimes necessary to be your own medical advocate.

I'm crossing my fingers and toes that you will be feeling better soon. Let us know how your appointment goes.

Hugs-

Julie

[tinkerbella]

Poppet,

I'm glad you finally feel validated. My PC is sending me back to my Rummy as she wants me on Remicade infusions for joint pain and to stop my organs from being attacked. I had refused all the other meds in the past due to the side effects , but we decided that now it's time. Good Luck Sweet one. We all have to make our own decisions about what is best at what time about what to take.... Keep us updated.

xxxx's

Bellamia~

[dsdmom]

dsdmom, If I were to be told this in a forum situation I'd be freaking way beyond upset. It is up to the doctor to advise a patient of any prognosis. I once advised a nurse sister not to tell a brother that his prostate cancer would spread to his bones and that was a very serious cancer. I told her , "You might as well put a gun to his head and pull the trigger. It's up to his doctor to give him good or bad news".That was 18 years ago and my brother is alive and well today.

In Oct 2008,when I was first told that I might have MSA, I joined a forum for that. I immediately got a few replies saying things like, "Poor you. I'm so sorry that you have to be part of this forum", and " My deepest sympathies. This is a horrible disease". I immediately 'signed off for good' because I didn't need to listen to 'doom and gloom'.

A few days ago I saw a 3rd neurologist. This is a N of movement disorders who's not completely sure it's MSA and has ordered tons more tests. I wouldn't have wanted to think that I have been dying slowly over the past 15 months had I believed that I really did have MSA. I'm not denying that something is seriously wrong but still, it's up to this new N to give a final diagnosis. He came highly recommended and from all he did for me on my 1st appt, I trust him and know he'll be the one to finally know exactly what's going on.

Mary P

Mary P, if you reread my message, I am not giving Poppet a prognosis at all. I know nothing about her other than she thinks she may have lupus. My only advice is to see a doc about it and hopefully to get treated quickly IF that is what she has. Again, I did not do it to scare her and I apologize if she was scared but I am not diagnosing or giving a prognosis. Just giving a tale of experience.

Poppet - glad you are seeing the doc next week - hopefully he/she can figure out what exactly is going on and get you on the right path.

[poppetkazutaka]

Mary P, if you reread my message, I am not giving Poppet a prognosis at all. I know nothing about her other than she thinks she may have lupus. My only advice is to see a doc about it and hopefully to get treated quickly IF that is what she has. Again, I did not do it to scare her and I apologize if she was scared but I am not diagnosing or giving a prognosis. Just giving a tale of experience.

Poppet - glad you are seeing the doc next week - hopefully he/she can figure out what exactly is going on and get you on the right path.

I'm a little worried though, and plan to ask the doctor but...

Since I work in a call center, if I seek treatment and have to be put on long term immunosuppressants...does that mean I have to quit my job? Because this place is a germ factory!