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New here. Waiting on lab results.


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Old 06-15-2016, 07:18 PM   #16
somebody84
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Re: New here. Waiting on lab results.

Thank you again. I started making a list of my current diagnoses, my current health issues (currently happening), and my ongoing issues (fatigue, joint pain, etc). I also have a copy of my blood results from the Urgent Care, the ER and my old rheumatologist. Iíll also start making a symptoms log. I can probably get a journal for that, too.

I donít know what the threshold test is for ANA. I know that some of blood work simply said ďANAĒ on it but there is no titer or anything listed. I donít know why my liver enzymes were evaluated, but possibly due to all the acetaminophen and ibuprofen I've been taking, but never over the daily dosage. Just as directed. Or maybe itís something else. I donít really know. Iíll let the doctor figure that out.

Oh boy, my rheumatologist had me on a lot of different medication. Actually, it wasnít even my rheumatologist. I saw her the first visit and then after that I only saw the physician assistant, and before I left the practice I asked to see the actual rheumatologist and it never happened.

They had me on: voltaren (for pain and swelling in my elbow), diclofenac sodium, Sonta 5gmg, Savella 50MG, Gabapentin 300MG, Cymbalta 30MG, Ambien 5MG (taken once), Robaxin 500MG, Seroquel 25MG, Vitamin D, Amitriptyline 10MG, and Meloxicam.

The diagnoses she had made were: Vitamin D Deficiency, tennis elbow, headache, fatigue, insomnia, rash and pain-neck. She also diagnosed me with fibromyalgia, which I didnít agree on. I didnít have the trigger points and none of the medication ever helped, and every time I had a complaint she would fall back onto that. It was really frustrating. My old rheumatologist was the one that confirmed my raynauds when my old primary doctor spotted it. So, it was a variety of many reasons why I stopped seeing them and that was over a year ago.

I do agree that the Urgent Care and ER are not the best place for a complete non-urgent diagnosis, however, I went into Urgent Care thinking I had a bad flu and he showed more interest and compassion in my situation than my own rheumatologist did.

I did check the side effects of the migraine medicine. Itchiness & rash is listed under allergy side effects. Not under normal side effects.
My appt tomorrow is at 11. I will keep you all posted.

 
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Old 06-15-2016, 07:53 PM   #17
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Re: New here. Waiting on lab results.

OK, much to lay out, so just take a deep breath and do it in date order, no matter how goofy it looks. (My 2nd rheum found my history & meds totally goofy, not what *he* would have orchestrated, had he'd been in charge.) So that's what this list might convey to *wiser* doctors. And, for any date for which you have labs to attach, cite the attachment/date.

We're all really rooting for you, so keep at it. Sending more hugs!

 
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Old 06-16-2016, 04:08 PM   #18
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Re: New here. Waiting on lab results.

So, today went okay I think. Aside from the ridiculous amount of time I was waiting to be seen (1 1/2 hours) I think this doctor was quite nice and informative.

I brought in my blood work, my current health issues and the symptoms I've been dealing with. I also let her know what medications I take now and which ones I stopped.

The doctor went over the papers I brought in, my symptoms, and my blood work from ER and Urgent Care. She said that there's stuff that catches her eye, but it's not enough for her to bite into. She said my dsDNA antibody from Urgent Care was positive and that tends to go with Lupus. However, she wanted to run more blood work. She wasn't happy that she couldn't see the titer.

She also brought up the topic of cancer, because she felt that an x-ray should've been taken of my chest. She said when people don't feel well for so long that it's good rule it out, but after she listened to my lungs she didn't feel it was needed, yet. Also, because I had an x-ray a year ago.

She said that she feels like there's something auto immune going on with my body. Quite possibly Lupus. She said I am most likely dealing with a virus on top of it. She doesn't want to run the blood work right now, because she says not much will change in 2 days. Instead she wants me to start taking a vitamin d supplement, recover from this virus, and kick the fevers. I'm to come back in 2 months so she can do a full auto immune work up and run some other blood tests. She says that although she thinks I have something auto immune going on it can sometimes take awhile to make the diagnoses. Which I am familiar with. She also said that if it is Lupus that we will catch it.

So, that's my update. I'm not going to shuffle myself off to a specialist, yet. She seems to want to help me so I am going to let her. The waiting part is hard, but if it gives me my answers I'll have to be patient.

She also gave me some tips on things I can do in the mean time to help feel better and to come back sooner if I need to.

Last edited by somebody84; 06-16-2016 at 04:18 PM.

 
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Old 06-17-2016, 04:58 AM   #19
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Re: New here. Waiting on lab results.

somebody, I'm glad you touched base post-appointment!

Earlier I called ANA a "threshold test". When ordering labs for a possible AI, a common approach is to first order two high-level tests, ANA (it's a general test that signals the possibility of SLE and quite a few other AI's as well) and anti-CCP (signals the possibility of early RA), then wait for meaningfully positive result(s) before proceeding any further down either path (or maybe both paths). In that sense, both are "threshold tests". Otherwise, doctors would immediately order a huge number of very expensive blood labs, and maybe imaging tests (like for suspected RA), and maybe even tissue biopsies, but could strike out totally because they were barking up the wrong trees.

Have you read the current formal criteria used to diagnose and classify SLE? You may find them in the "sticky post" section [permanent info posts] located just above the user threads. In the one with the standard criteria, keep scrolling down for a SECOND LIST called "alternative criteria", which are very interesting, too. Also, there are separate "stickies" on skin rashes, on APS, on reading resources, etc.

Generally, but not always, a patient must fulfill 4 or more of the formal criteria to sustain a dx of SLE. In the criteria, you'll see that only some are labs: certain skin manifestations & certain symptoms are also criteria, so a doctor assessing for lupus must ALWAYS look beyond mere labs.

I think it's great that your new primary is taking you seriously. Now you can study the criteria and think alongside her. And if you start feeling stuck, or feeling worse, you'll know it's time to seek a specialist(s).

Did she run any new tests? You could collect all the recent ones & put them in a binder, newest on top. Also, you could read. I borrowed lupus hardcovers from my library: I didn't read every line, only those sections that looked pertinent. Anyhow, stay in touch while you await further developments, OK? We're here when you feel like talking. Sending more hugs!

 
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Old 06-17-2016, 07:27 AM   #20
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Re: New here. Waiting on lab results.

Thanks for the reply!

I'm not sure exactly what tests she will be running but I know she wants to repeat my tests from urgent care and do a few more. She didn't run any tests right now since I've been sick. When I go back in 2 months we will do everything then and I'm to continue jotting down my symptoms, etc. She also said that if it is auto immune / lupus that we would catch it eventually, which makes me feel like I won't get brushed. Like she's actually interested in helping me. I think I want to give her a shot and then head to the specialist.

I have read the criteria for diagnosing SLE and the alternative criteria. Thank you. I will brush up on it and keep it with me just in case for my next appt.

Thanks for the tips. I'll be sure to put all my recent results in a binder and start a journal. I'll keep everyone updated. Oh, and find that book, too.

Oh, and if I do feel worse before my appt I'll be sure to go back and ask for the tests to be done earlier / or see a specialist. Thank you for all the help.

Last edited by somebody84; 06-17-2016 at 07:28 AM.

 
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Old 06-17-2016, 08:34 AM   #21
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Re: New here. Waiting on lab results.

You are entirely welcome! We'll root for you & watch for updates. Bye for now.

 
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Old 08-05-2017, 10:05 AM   #22
somebody84
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Re: New here. Waiting on lab results.

Hello, everyone! It's been awhile but I wanted to check in. Last time I was here my Fiance and I were trying for a baby and I now have a beautiful 4 month baby girl.

I'm also in the process of lining up my appointments so I can go in for a follow up and start seeing the specialists again (like my neurologist for my ocular migraines).

After I had my baby I noticed my left sided head / neck / and arm pain were getting worse. A lot of the pain was pushing against my left eye and I decided to see an eye doctor on it. Turns out I have chronic iridocyclitis - which is a sub-type of uveitis. I now have to put steroid eye drops in my left eye for a few weeks.

But, upon thinking about it.. since I left my old rheumatologist, in the past two years it's like my body went crazy:

Pleurisy
Inappropriate sinus tachycardia
Viral meningitis
Random rashes (itchy and not itchy) some would be recurrent before finally disappearing
Strep throat
Left sided body pain / ocular migraines
Bumpy rash from sun / sunburn
And chronic iridocyclitis

Among my other diagnoses (Rynard's, chronic pain, chronic fatigue, facial rash, etc).

I decided to put together a list of all my past and current diagnoses, gather any blood work I could and make another appt. I'm still not comfortable seeing my old rheumatologist, but I did find another who is a little further, a smaller practice and had great reviews. I have an appt in just a couple weeks. It'll be good to get another look over and another opinion. I'll keep everyone posted.

Last edited by somebody84; 08-05-2017 at 10:10 AM.

 
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Old 08-17-2017, 03:06 PM   #23
somebody84
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Re: New here. Waiting on lab results.

I posted this on the autoimmune board, but am posting an update on my old thread incase anyone is following.. thanks.

Since I last posted I had another follow up with my eye doctor and she was concerned. The inflammation in my left eye had gone up and she put me on some stronger steroid eye drops. She encouraged me to continue with my new rheumy appointment and was concerned about autoimmune conditions (based off my health history, too) and that the underlying condition needed to be treated in order for the uveitis to get better.

Well! I had my appointment with the new rheumy today. She checked my joints, went over my symptom / diagnosis list, my past labs and the picture of my rashes. She mentioned RA and Lupus, but wanted to get more blood work. She also wants to get my medical records from my old rheumy. She said I had a couple swollen joints, but didn't feel an x-ray was needed, yet. She said she wasn't surprised that I felt better during my pregnancy. She said it's not uncommon for that to happen, and that a lot of times after one gives birth, a flare up can happen. She ordered a lot more blood work and said that we would figure this out. I'm feeling hopeful that I'lll finally get some answers. I should have my blood results before my next appointment. Either way she wants to see me in 2 weeks. She did advise that I try to keep out of the sun, but if I do go outside to use high SPF and try to cover up as much as possible.

 
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