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    Old 04-09-2004, 04:24 AM   #1
    Join Date: Jan 2004
    Posts: 73
    seatx HB User
    Smile Search for Diagnosis Update

    Hi all,

    I have posted a couple of times and wanted to share the latest. Here is a list of my symptoms and lab results. Sorry this is so long, but perhaps it can help someone else.

    2001 Numbness/tingling left side (middle, ring and pinky fingers and toes and spot on left cheek that moves around)

    Hyperthyroid-treated with RAI 1995, subsequently now hypo. TSH has bounced around from .1 - 9. Has not been steady. Showed the December PCP labs to him and he said "this just tells me you have an infection, I would wait to see a rheumatologist." This comment was to me directly opposite of their vow to "do no harm" (have switched Endo's).

    Facial nodules-began April/May of 2003-semi-tender to touch, do not itch. Last about a week.

    Joint pain-mostly elbows, wrists, shoulders, fingers, occassionally hip and knee. (Noticeable enough for Dr visit summer of 2003) Xray of wrist revealed nothing significant

    Sleep apnea dx-April/May 2003

    Saw PCP and thought perhaps that nodules were a reaction to neoprene in CPAP mask/headgear. Covered headgear in muslin, no significant difference.

    Nodules began appearing on neck in Nov 2003. On upper chest and upper back in January. Arms and hands February. Buttocks and under the arms March. (I found no correlation between weather, period or food and the nodules that I could report)

    Chest pain summer of 2003. Nuclear stress test in October-negative, heart looked "great"

    Saw PCP multiple times in fall of 2003. Saw his PA in October and she consulted with his partner (regular doc was out that day) and in conversation with him, she mentioned Lupus (most likely discoid, but I can't remember). Asked if they thought it could be a reaction to the neoprene and they were in agreement that it could.

    Finally in December at my prodding the PCP ran blood work:
    Platelets 423 H on a scale of 140-415
    Polys 36 L on a scale of 40-74
    Lymphocytes 57 H on a scale of 14-45
    RA 15.5 H on a scale of 0-13.9
    TSH 7.083 H on a scale of .35-5.5
    Sed rate 30 H on a scale of 0-20
    ANA-positive with homogenous pattern
    Titer 1:1280
    Crp 20.9 H on a scale of 0-4.9

    Referred to Rheumy
    1st rheumy Labs from one week after PCP labs:
    CRP .8 normal on scale of 0-.8
    C3 complement 138 normal on scale of 88-201
    C4 50.6 H on scale of 16-47
    RA 21.6 H on scale of 0-20
    Cryoglobulin Q1 Serum Rflx-None detected after 72 hours
    Anticardiolipin AB,IgG,QN 7 normal on a scale of 0-10
    Anticardiolipin Ab, IgM, QN <6 normal on scale of 0-9
    Angiotension-Converting Enzyme 39 normal on scale of 8-52
    Ana Elisa Screen Positive at 5.36 on scale of .9-1.09
    AntiRoSSA, AntiLa SSB, Anti-SM, Anit-RNP, Anti-double stranded DNA all negative
    Sed rate 43 H on scale of 0-20
    No protein or blood in Urine

    Forced my way into another appointment with 1st rheumy when nodules first appearred on back. Asked him point blank if it looked like Discoid Lupus, his response "not yet." I personally found that answer unacceptable, as if he was waiting for some other symptom to appear (patience is not my strength).
    Was told to see a dermatologist.

    Saw dermy next day, biopsy was not conclusive for lupus or Sweet's disease.

    Back nodules morphed into semi-circles/rings in February.

    Saw PCP and persuaded him to run a Lyme test.
    Negative for lyme.
    Ana positive, homogenous
    Titer 1:640
    Platelets 484 H on scale of 150-450
    Lympocytes 57.3 H on scale of 15-49
    Neutrophils 35 L on scale of 38-80
    RDW 11.4 L on scale of 11.7-15
    MPV 7 L on scale of 7.5-11.5
    TSH 1.69
    Sed rate 36 H on scale of 0-20

    Saw 1st rheumy again in February-still no diagnosis. Talked about treating with Plaquenil if symptoms continue.

    Saw 2nd rheumy in March.He ran much more specific tests in search for an answer. Didn't think it was necessary to run the normal ones again so soon.
    Sed Rate 36 H on scale od 0-20
    CRP .7 H reference range <.5
    Anti CCP <20 Normal
    Lupus anticoagulent Comprehens
    PT 12.2 on scale of 11-14.5
    INR 1 L on scale of 2-3.5
    PTT-LA 44.5 on scale of 0-52
    APTT 30.1 L on scale of 31-39
    APTT 4:1NP 29.7 L on scale of 31-39
    Dilute Russell's Viper Venom 40.2 on scale of 0-45
    Thrombin Time 19.2 H on scale of <18
    Hexagonal Phase Phospholipid 2.1 on scale of 0-8

    Quote from lab sheet "Results do not indicate that presence of a Lupus Anti-coagulent. Abnormal high screening results (PTT-LA, DRVVT, Mixing studies) may be due to medication (heparin, warfarin, aspirin), Factor inhibitors anticardiolipin antibodies or poor specimen integrity.

    (I was taking one aspirin a day).

    Talked to the rheumy about possible DIL as I was taking Tri-phasil (BC) and in the literature for the drug way down on the list of possible but not documentated side effects it said "Lupus Like Syndromes". Rheumy said "you don't have Lupus like syndromes" He feels I have 1 of the 11 criteria. I think I have 3.

    Was referred to a derma-pathologist who's speciality is auto-immune based rashes, specifically Lupus.

    Saw her 4/7. Gave her a copy of all my labs (including tsh values back to 1995), and digital pictures of nodules. She is at a teaching hospital and had an intern come in ask the baisc questions and look over the results and then present them to her.

    She came in and confirmed some basic info (how long etc) and said I guess you are here for an answer to all this. I of course said yes and she said I think I can give you one. The weight (or some may say wait) of the world suddenly lifted off my shoulders.

    She feels it is Tumid Lupus, which is a subset of cutaneous lupus. I asked why the biopsy in January didn't pick this up and she indicated that this type of lupus resides or shows up in the lower layers of the skin and what was checked in January was the upper levels and it wouldn't have shown up. She also said that in her opinion too many rheumy's put too much emphasis on the 11 criteria. Said that it was originally developed as a broad guide line and now it has become used as a very strict guideline by some. Thank God for an honest answer.

    As fate wold have it, I had a flare Tuesday night into Wednesday morning so she had something other than pictures to look at.

    I also asked her what percentage of Tumid patients then go on to develop SLE and she indicated that there wasn't enough data (it is not a very common subset) at this point to give me a firm % but said that she thought it was similar to discoid (which I believe is 5-10%). Again, thank God for an honest answer.

    I asked her how positive she was of the diagnosis because in my search for an answer I had another rheumy appoint lined up for today. She indicated that she was about 75% sure and that her biopsy would hopefully bring it up to 100%. She asked who the rheumy was and when I told her she indicated that he was pretty good with the skin versions, but she really didn't feel I needed to keep the appointment.

    I feel she is using the biospy to confirm rather than diagnose. (Fine with me) Results should be back next week and since she is a dermapathologist she said she would personally look at the slides as well as the lab. Biopsy was at least a half inch deep.

    She is the only doctor who has thanked me for bringing all the labs, especially the pictures. The rest have acted like it is just too much information. She is also (with the exception of my PCP's PA) the only woman. Treatment is plaquenil and sunscreen.

    I recommend her without reservation. She only sees patients who have been referred by rheumy's. She is in Dallas TX. Her name is Dr Melissa Costner and a google search will bring up some info if anyone is interested.

    When I told her I thought we would probably end up with something like this and call it women's intuition or gut instinct and that I had already had my comprehensive eye exam. She smiled and kind of chuckled. Because she could tell I had done my homework and the fact that I had educated myself on the disease and treatment, she is going to share the info over the phone rather than having me take off work again. Hooray, hooray!!! Results should be back next Wednesday or Thursday.

    On the one hand I hope she is right and we can get on with it and begin treatment. On the other hand I don't want any of this, but of all the various types, this one seems to be one of the lesser ones.

    Will let you all know if it is indeed Tumid lupus. Dr Costner also said that there is some discussion in the literature as to whether or not TLE is the same thing as Jessner Lymphocytic Infiltrate. There are bisocally two camps, one that thinks it is and one that thinks it isn't. She is more towards the thinks it is side. With that, if the biopsy confirms it, I am going to ask her to make the official diagnosis JLI in the hopes that it will prevent insurance coverage issues later down the line. I think that coverage issues with Lupus are partly the result of insurance companies lopping all types of Lupus together and assuming that they are all SLE.

    PS: My mom is a nurse as well and has gone with me to all the appointments. Most nurses have very strong opinions of Doctors after they meet them, they can also talk to them in Doctor speak if necessary.

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    Old 04-09-2004, 07:53 PM   #2
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    Re: Search for Diagnosis Update

    Hi, there, seatx.

    I read through your long post. Wow... You type really, really nicely, by the way!

    I paused on your February note re: your back nodules morphing into rings. I also had skin "bumps" or "welts" that morphed into rings. Took me many years to be Dx'ed, by a rheumie & a dermatopathologist, with SCLE = subacte cutaneous LE. Morphing rings are indeed the classic form of SCLE, although there is a "psoriaform" version, also (I assume it's like a carpet of bumps?)

    Just for whatever it's worth, seatx. Hang in there. Keep us current, OK? These "rarer rash" stories always interest me, having been there & done that! With all best wishes to you, from Vee

    Last edited by moderator2; 04-10-2004 at 07:13 AM.

    Old 04-10-2004, 03:48 AM   #3
    Join Date: Jan 2004
    Posts: 73
    seatx HB User
    Re: Search for Diagnosis Update


    Thanks for replying.

    For the rings, my center is more the coloring of my skin rather than an off white. Also the ring edges themselves have a much wider band. The discoid ring edges seem to be much thinner. Currently mine last about a week and when they start to fade the look like bruises.

    I wouldn't call my nodules "carpet" nodules at this point. The ones on my chest have not morphed into rings yet, just the ones on my back and butt. The ones on my back seem to cluster around my shoulders.

    I'll let you know what the biopsy comes back as.

    Last edited by moderator2; 04-10-2004 at 07:12 AM. Reason: Please carefully read, know and follow the Policies and Guidelines. Click on FAQ at the top left of this page. Thank you!

    Old 04-10-2004, 05:44 AM   #4
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    Re: Search for Diagnosis Update

    Good morning, seatx.

    You mention the Loyola pic of the rash on the woman's arms. Yep! That's the very one I found, printed, and took (in a total snit) to my GP, in about year #6 of my rashes.

    You mention that the pic & your rashes match in some ways & vary in others. I finally hit the pt. where I looked a lot like the Loyala picture: had different stages of the rash still visible simultaneously. i.e., some raised welts (new lesions), some perfect rings (middle-aged), and some rings expanded outwards into irregular shapes (old and almost gone).

    My last rashes came on very fast, with only brief sun exposure (e.g., 10 mins of weeding in a partly shaded area). Photosensitivity had increased hugely.

    Oddly (or maybe not), no antibodies have ever been found in me, nor have I had a positive ANA. (My rheumie says they might have been there to find, but there is no way of knowing know.) I did have anemia, though, and one of the complements was low (not sure which). Derm/path & rheumie called me "a subset of a subset", meaning SCLE represents (at most) 10% of all Dx'ed lupus, and within that, the antibody odds are roughly 70% yes vs. 30% no. Naturally I was in the 30% group valiantly defying diagnosis...

    Dr. Costner sounds truly great! I also ended up being Dx'ed by a derm/path (who aren't all that common, actually), working alongside new rheumie. And yep, those biopsies hurt. I got 5 stitches for each.

    I hope you are guarding against more sun exposure while waiting for answers, just in case... I also ended up getting a few "discoid" (scarring) lesions. i.e., you may be "eligible" for multiple types of rashes.

    Hang in there. Have a great weekend. from Vee

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