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What should I do?

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Old 12-01-2012, 05:51 PM   #1
Join Date: Dec 2012
Location: Cedar Rapids Iowa USA
Posts: 4
jazzyjjm HB User
What should I do?

Hello, all!

I am new to this site. I am currently undiagnosed though I have a myriad of symptoms. I was refered to a Rheumotologist who poo-pooed my concerns. Should I seek another referral to a different Rheumy?

Here is my list of symptoms including test results:

Test Results:
In the past month
Positive ANA Speckled Titer 1:160
Elevated SED Rate 25
BUN 6 (low)
Hystoplasmosis (negative)
Lymes (negative)
DRVVT Screen 35.8
TSH 2.34
25-Hydroxy D 18 (low)
25-Hydroxy D2 <4.0
25-Hydroxy D3 18
SS-A/Ro Ab <0.2
SS-B/La Ab <0.2
Sm Auto Ab <0.2
Scl 70 Auto Ab <0.2
Cyc Cit Pep Ab <15.6
Jo 1 Auto Ab <0.2
U1RNP Auto Ab <0.2
Phospho IgM <4.0
Phospho IgG <4.0
dsDNA IgG <12.3
Lung x-rays (negative)

In the past year
WBC 11.6 (high)
Lymph % 14 (low)
Neutro Absolute 8.4 (high)
Mono Absolute 1.0 (high)
Calcium Ionized 4.5 (low)
Mono % 12 (high)
AST 60 (high)
ALT 72 (high)
Eos % 8 (high)
Eos Absolute 0.6 (high)
Lung x-ray positive for pneumonia

Pneumonia 4 times in the past year
Ongoing decreased lung functioning
shortness of breath
joint aches worse in the mornings and evenings
stiffness of joints (but no swelling or redness or heat)
achy legs
hair loss
weight loss
blisters/sores on face like canker sores
sore in left nostril that won't heal
rash on hands after being outside gardening
dry eyes and throat
chest pain
constant dry non-productive cough worse at night or when laying down
frequent low grade fevers usually in the evenings with chills
easy bruising that takes a long time to heal
rash/sores behind both ears that won't heal (have had for several months)
extreme fatigue
Reynaud's Syndrome (bright red hot hands, grey/purple cold feet)
frequent Migraines or severe headaches
frequent Dizziness/Vertigo
Pale skin, dark circles around eyes
Constant sore throat that doesn't go away

The Rheumotologist said he thought I have fibromyalgia. I was diagnosed with this in 2005. What I am experiencing in increasing symptoms and severity does not feel like the fibromyalgia symptoms I've had for the past 8 years. I am frustrated that the Rheumotologist isn't listening to me or my concerns. What do others in this site think? What do you think may be wrong with me? Should I seek another opinion? Please help me!! Chris K

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Old 12-02-2012, 03:00 AM   #2
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Re: What should I do?

Jazzy, hi & welcome. I'm really sorry you're having problems. Because I'm merely a patient, please read this accordingly, OK?

Did your labs show reference ranges? I'd be curious about Cyc Cit Pep Ab; I think it's a test that can suggest "early" RA and lupus (not sure if anything else). Also about dsDNA, an autoantibody strongly associated with lupus. Even though neither are labelled "high" in your post, I'd want to know whether your results suggest monitoring & repeat testing. (BTW, I believe certain AI tests can wax/wane as disease flares come/go. How awful did you feel when your blood was drawn? I think some AI tests are most useful when a flare is "on the rise".)

AST & ALT. Did the rheum. comment on these liver values being elevated?

Lung problems. Wow! These sound awful for you, and in a single year, no less. Have you had tests beyond x-rays? I'd definitely want further tests.

Facial blisters/sores and rash/sores behind ears. Lupus is one condition that can certainly mainfest itself in the skin, in a variety of lupus-specific rashes, also in non-lupus-specific things. One key signpost for the lupus-specific stuff is photosensitivity. One type, "discoid", tends to scar or depigment; the "malar" butterfly is very classic to lupus. Do your lesions/rashes itch, burn, scar, depigment, come & go, etc.? Are they photosensitive? Have you seen a dermatologist?

Migraines. Antiphospholipid syndrome is a blood clotting disorder seen in a fair number of lupus patients; it can cause migraines. Your DRVVT test (which you don't show as elevated) seems aimed at APS, but I don't know whether DRVVT is the *only* test typically run to screen for APS, or whether findings can wax/wane as symptoms come/go. (I'd ask.)

Overall, I'd certainly try getting more feedback about your recent results from the rheumatologist or from your GP. If I didn't get clear answers, I'd line up another rheumatologist, make contact, and ask whether to book now vs. when I started feeling lousy again. I'd definitely want further lung tests (if not done yet). I'd also consider a dermatologist.

Another thought: you could check out the lupus board. I'm not saying you have lupus, only a doctor could say, but there's useful basic info there on lupus and APS in the "sticky posts" & the user posts. Also, maybe people with insight into your "not elevated, but not non-existent either" lab values.

Post more when you can, OK? I'd love to hear more about your rashes, whether you've had add'l lung tests, etc. And I hope others chip in, especially because we vary so much with our AI's or suspected AI's. I'll say bye for now. Sending warm wishes, sincerely, Vee

Old 12-02-2012, 03:23 AM   #3
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Re: What should I do?

CORRECTION. Jazzy, something I posted about Cyc Cit Pep Ab (Cyclic Citrullinated Peptide) looks wrong (sorry). It lloks like an early marker for RA only (not RA and lupus). Although yours wasn't labelled "high", it still catches my (patient's) eye, esp. because *lung disease* is so common in RA, and you've had such lung problems. You could check out the RA board, too.

Patients can have "crossover" conditions. For example, "rhupus" features symptoms of RA and lupus.

Sorry for my error. I do hope you post more soon. Bye, Vee

Old 12-02-2012, 06:39 PM   #4
Join Date: Dec 2012
Location: Cedar Rapids Iowa USA
Posts: 4
jazzyjjm HB User
Re: What should I do?

Hi, Vee. Yes, I have had numerous lung/breathing tests. All show continued lung restriction, though I have been on Pulmacort and high doses of prednisone for the past month. I am waiting for a call back on the actual results but the tech administering the tests ran them over to the Pulmonologist while I sat there because she thought he should see them. He told her to tell me that my Pulmonologist will be calling me himself and to expect more testing in the near future. That was last Wednesday, November 28. No call yet, though. Nor have I received a call on the full body joint scan performed the same day.

As for symptoms, I have been progressively getting worse since last January (2012). When I had the labs drawn, I was not able to walk from the parking lot next to the clinic into my appointment. They had to get a wheelchair for me. I'm 44 years old. I was severely sick that day. My husband and I both thought they would hospitalize me but the Rheumy acted like nothing was wrong and that I was perfectly fine. I will ask more questions about the lab results to get a better idea of what they exactly mean and what he has actually checked so far (and what he hasn't). I guess maybe my next step is to call my GP again, and make another appointment to see him. When I called to ask a question on a different matter, though, he was hesitant to talk with me. I think he would prefer I switch doctors and go to him again. He is a family doctor and has "treated" my sister by telling her she's a hypochondriac even though she has had many of the same symptoms for the past 4 years.

Anyway, I got the feeling my Rheumy was only concerned with possible RA diagnosis and totally disregarded lupus or any other AI conditions. I just don't know if I should just scrap the whole path I've taken so far and seek a different medical center (I was attending Mayo for diagnosis) or if I should continue seeking care through Mayo.

Hope this helps answer some of your questions and points. I really appreciate you responding to my post. My husband and I have been dealing with all of this for the past year and feel totally helpless, hopeless, and alone throughout this whole thing. He sat on the couch next to me last night (I was too sick to sit up for more than a minute or two), cried and said he feels like he is seeing me slip away from him a little more each day and that I am dying right before his eyes. He is so frustrated, and so am I. Thanks again for responding and I hope more people will as well. Have a good night! Jazzy

Old 12-03-2012, 01:37 AM   #5
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Re: What should I do?

Jazzy, has the Prednisone you've taken for the last month helped? (When steroids help, that can help doctors narrow the possibilities, I think.)

No patient wants to hear this, but some conditions are "diagnosis by exclusion". First come basic labs. Next, all labs available for a first set of most likely conditions (lupus, Sjogren's, scleroderma, RA, APS, etc.) If "no go", then tests for the next set of candidates. Interspered are procedures (like your initial breathing tests & joint scan), in a upward progression. Eventually the doctors may be left considering conditions that can cause your symptoms BUT for which NO SPECIFIC TESTS are available: but they've only reached this point by testing for, and excluding, all the preceding.

To the patient, the process feels endless and hopeless, but it's the very essence of how doctors figure out difficult-to-diagnose problems. Hey, you sure don't want them to say, "Well, since it wasn't any of the first 5, let's just quit here."

Whether you continue with these doctors or seek new ones, only you can decide. But honestly, from the tests you listed, I strongly doubt they're looking only at RA---you should just ask. You could also ask what they'll consider next; but because diagnosis is a "dynamic" process, with the next step depending on what was just learned, they may not be able to provide a road map.

Do the doctors know your SISTER has some similar symptoms? If not, I'd definitely tell them. For example, I think there are some rare inherited deficiences of certain chemical components of the immune process... or maybe they'd want to consider environmental causes...?

Is your next lung test a bronchoscopy, or something along those lines? Oh, if your pulmonologist hasn't called back as promised, just call him.

Your GP may not want to talk because there are experts involved & he's not in the loop. Plus he'd struck out already---and I don't mean that cruelly, it happens, that's why we have specialists. Truthfully, it feels to me like you need specialists for this.

I hope others post their thoughts. We're looking forward to your updates. With my best to you & your hubby, Vee

Old 12-10-2012, 01:37 PM   #6
Join Date: Dec 2012
Location: Cedar Rapids Iowa USA
Posts: 4
jazzyjjm HB User
Re: What should I do?

Hi, VeeJ.

I have an appointment with the Rheumy and Pulmonologist on Wed. The lung tests came back abnormal, with moderate lung disease. A diagnosis for this will be coming that day. The joint scans came back "normal", but with my other symptoms, the Rheumy wants to see me again. Since the SED rate and the ANA came back speckled titer at 1:160, we are still considering this likely to be Lupus. No concrete diagnosis yet.

I had to call the Rheumy to get the test results. I waited almost 3 weeks. He wasn't going to call me back. I did let the nurse know that his medical practices leave much to be desired, especially since I am so sick with no relief in site. The prednisone did definitely help, though now that I've been off it 10 days all of the symptoms are back... even the rashes. This seemed to be what caught the nurse's attention the most and why she felt a follow-up appointment was warranted. Thanks for your input. It has helped so much.

Old 12-10-2012, 02:27 PM   #7
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Re: What should I do?

Jazzy, good for you! Sounds like you got things really rolling again. Let us know how your Wed pulmonology and rheumatology appts go. Also, a big HURRAH for making the rheumatologist's nurse listen & book you for a followup. Sending you my best wishes, Vee

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