It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lupus Message Board

  • Systemic I want a DIAGNOSIS for Christmas

  • Post New Thread   Reply Reply
    Thread Tools Search this Thread
    Old 12-19-2014, 08:39 PM   #1
    mystrydiagnosis
    Junior Member
    (female)
     
    Join Date: Nov 2014
    Location: Southeast Asia
    Posts: 40
    mystrydiagnosis HB User
    I want a DIAGNOSIS for Christmas

    Hi,

    I've been posting on Cancer forums but am moving now to the Lupus forum. I just saw a Rheuma this past week and have my follow-up sched for next Monday. My history is a bit long...

    -Got sick mid-July 2014 w/abdominal symptoms (diagnosed/hospitalized w/ UC/Gastritis 2012). Started low-grade fever Aug 2014.
    -saw Gastro: she says UTI, puts me on Cipro. Cipro gave me bad side effects, so switched to Augmentin
    -Procto shows minimal colitis/hemorrhoids
    -Hospitalized w/kidney infection (augmentin didn't work) for 1 wk beg Sept 2014. Put on Tazobactam. Stopped after 4 days (drug effective in getting rid of bacteria, but Urine culture showed NO GROWth, so lab declined further antibiotic)
    -fever returns w/other symptoms. I see many drs. TB tests negative, EBV/CMV negative, continuing bacterial vaginosis (treated w/Co-AX), then candida non-albicans (treated w/Diflucan), Pelvic abscess treated w/Klindex (Clindamycin).
    -symptoms continue. Adding muscle weakness, tiredness, dizziness, some minimal joint pains, tiny hives on feet/ankles, continuing right-sided abdominal pain.
    -CT scan of abdomen shows pelvic abscess 9/16. treated effectively
    -saw OB several times. OB finally says my problems are not OB related, even though my menses is delayed twice (6 wks instead of my usual 4).
    -2nd colonoscopy to help identify right-sided pain shows clear colon w/hemorrhoids
    -positive for C. Diff antigen, neg for toxins. Blood cultures (1 wk and 1 month) show no growth, Blood test for TB negative, urine cultures taken twice. One shows three bacterias, the second shows diphtheroids and yeast. No treatment.
    -2nd CT scan of abdomen yields incidental note of a few pleural nodularities. Follow-up Chest CT shows several nodules/fissures in/on lungs, all under 1 CM in size. Also bilateral apical pleural thickening.
    -2D Echo w/Doppler shows valve regurgitation in mitral, pulmonic, and tricuspid valves
    -ANA positive 1:40 speckled
    -BUN 6 (range 7-18) (was in normal range back in August)
    -Creatinine normal
    CBC shows high neutrophil and low lymphocyte count
    Urinalysis shows trace of leukocytes, casts, RBC, WBC, lots of bacteria

    -ANCA negative
    -Vit D level normal
    CRP <6 (range 0-6)
    CPK-Total 27 (range 26-192)
    -C3 normal

    Wondering if this might be Lupus????
    current symptoms: increasing weakness, fatigue, dizziness, chest pain, muscle weakness in arms and legs, minimal joint pain, nightly headaches w/sinus pain, blurred vision, daily low-grade fever going no higher than 38.4

    thanks

     
    Reply With Quote
    Sponsors Lightbulb
       
    Old 12-19-2014, 08:46 PM   #2
    mystrydiagnosis
    Junior Member
    (female)
     
    Join Date: Nov 2014
    Location: Southeast Asia
    Posts: 40
    mystrydiagnosis HB User
    Re: I want a DIAGNOSIS for Christmas

    Oh, and my last ESR (abt 1 month ago) was 26 (range 0-20)

     
    Reply With Quote
    Old 12-20-2014, 12:31 AM   #3
    ladybud
    Senior Veteran
    (female)
     
    ladybud's Avatar
     
    Join Date: Jun 2012
    Location: Colorado
    Posts: 6,123
    ladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB User
    Re: I want a DIAGNOSIS for Christmas

    Hi and welcome to the boards. You have been through quite the string of problems since last summer. I would not get your hopes up that you will have a diagnosis by Christmas, but I do think lupus or something close to it (perhaps RA or MCTD) is very possible. The specific symptoms that could be suggestive of it are the chronic low grade fever, pleural thickening and pulmonary nodules, muscle weakness and pain, joint pain, headaches, fatigue and repeated infections. The high sed rate and + ANA are borderline abnormals that most rheums would not be too impressed with, but IMO, warrant further testing with additional antibody testing (anti-dsDNA, anti-Smith, anti-CCP, RA factor, anti-RNP, anti-phospholipid). Your urine casts and RBCs as well as low lymphocytes on CBC are consistent with blood abnormalities seen in lupus too. Some people with lupus actually have an immune deficiency along with it, and IGA, IGG testing might help since you have had recurrent infections involving the mucous membranes. Colitis is an autoimmune disorder too, so fits in the same family of immune problems. I think more testing will need to be done to really get to the point of a diagnosis, but I think you are on the right track pursuing an autoimmune basis for your symptoms. Your ANA should be repeated as well, and a higher titer would be helpful in terms of catching the attention of a rheum. Good luck with this, and feel free to post again with your progress.

     
    Reply With Quote
    The Following User Says Thank You to ladybud For This Useful Post:
    mystrydiagnosis (12-20-2014)
    Old 12-20-2014, 01:10 AM   #4
    mystrydiagnosis
    Junior Member
    (female)
     
    Join Date: Nov 2014
    Location: Southeast Asia
    Posts: 40
    mystrydiagnosis HB User
    Re: I want a DIAGNOSIS for Christmas

    My dr. ordered two primary immunodeficiency tests. I'm still waiting for one to come back, but got one result already. The first result shows IGg, IGa, IGm, and IGe and is all within normal limits.

     
    Reply With Quote
    Old 12-20-2014, 01:12 AM   #5
    mystrydiagnosis
    Junior Member
    (female)
     
    Join Date: Nov 2014
    Location: Southeast Asia
    Posts: 40
    mystrydiagnosis HB User
    Re: I want a DIAGNOSIS for Christmas

    What about the regurgitation in three valves of my heart? Does this happen commonly with lupus??? I"m having increasing dizziness, light-headedness, fast heart beat, etc.

     
    Reply With Quote
    Old 12-20-2014, 05:36 AM   #6
    VeeJ
    Senior Veteran
    (female)
     
    Join Date: Feb 2004
    Posts: 5,711
    VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
    Re: I want a DIAGNOSIS for Christmas

    Hi & welcome. I think the best place to start is with the "sticky posts" (the permanent info posts you'll find right above the user threads). In one of them, you'll find 11 diagnostic criteria. To sustain a dx of SLE, you generally (not always) must meet 4 or more of the 11 at some point in time, meaning not necessarily simultaneously.

    Next step, which your rheum is likely doing as we speak: try to ascertain how many of those 11 you may have met---and, as important, like Ladybud says, whether you've even had the right tests at the right time to prove or disprove them. What catches my attention the most:
    • You said your 2012 hospitalization is for "UC/Gastritis". By UC, do you mean ulcerative colitis? Were you ever dx'ed with UC? If yes, do you take any meds for it?
    • The only ANA you list, 1:40, is barely elevated.
    • The only ANA subtype you list, ANCA, was negative. This is associated with vasculitis. There are others much more associated with lupus.
    • You get a LOT of infections: UTI in Aug 2014, kidney infection Sept 2014, and your last line above your labs says "lots of bacteria". Also, the last urinalysis you cite also mentions casts, RBC, and WBC.
    • You've been hammered with antibiotics, to the point of testing positive for the C. difficile antigen. Also, as we women know, antibiotics themselves can unfortunately cause additional infections, like yeast.
    • What was the "pelvic abcess" found on 9/16: was it diverticulitis, a GI perforation, or what? Did the doctors correlate it to your continuing right-side abdominal pain? Is your "right-sided abdominal pain" anywhere in the region of your appendix?

    I'm only a patient but I really don't see many, or too strong, lupus pointers in what you know so far, so Ladybud's comment about further lupus-oriented* tests being needed makes total sense to me, too. (*As the 11 criteria suggest, there is no single test for lupus. Also, its lab signs are on/off, so diagnostically it's very challenging.)

    Since so many of your episodes involve UTI's and kidneys, I also wonder at the lack of renal/bladder ultrasounds (US) and 24-hour urine collection. For example, GI conditions like UC can dehydrate you, causing urine to become too concentrated, which in turn promotes formation of kidney stones.

    If you have frequent urinary misery in addition to your known UTI's & kidney infection, I'd also wonder about the possibility of IC = Interstitial Cystitis. (IC is an autoimmune.)

    Re your heart valve questions: I think mild regurgitation of heart valves is relatively common but that only a heart specialist can say how much concern is warranted when it's deemed "mild". (I'm unqualified to guess.) Same goes for your lung results (sorry).

    I'm really sorry for all your issues and look forward to hearing more, including anything you find out during your Monday follow-up with your rheum. If you can get copies of all the lab results, you should, then feel free to post whatever catches your eye. Wishing you luck & sending warm wishes, Vee

     
    Reply With Quote
    Old 12-20-2014, 06:23 AM   #7
    mystrydiagnosis
    Junior Member
    (female)
     
    Join Date: Nov 2014
    Location: Southeast Asia
    Posts: 40
    mystrydiagnosis HB User
    Re: I want a DIAGNOSIS for Christmas

    Thanks for your note. See my comments below...


    Quote:
    Originally Posted by VeeJ View Post
    Hi & welcome. I think the best place to start is with the "sticky posts" (the permanent info posts you'll find right above the user threads). In one of them, you'll find 11 diagnostic criteria. To sustain a dx of SLE, you generally (not always) must meet 4 or more of the 11 at some point in time, meaning not necessarily simultaneously.

    Next step, which your rheum is likely doing as we speak: try to ascertain how many of those 11 you may have met---and, as important, like Ladybud says, whether you've even had the right tests at the right time to prove or disprove them. What catches my attention the most:
    • You said your 2012 hospitalization is for "UC/Gastritis". By UC, do you mean ulcerative colitis? Were you ever dx'ed with UC? If yes, do you take any meds for it?

      Yes, my dr. conducted a Colonoscopy/Gastroscopy which yielded her diagnosis of UC and Gastritis at that time. Yes, Ulcerative Colitis. I was on Sulfasalazine for about 3 months at that time. This time, she only put me on Sulfasalazine for 1 month because I wasn't having much of a flare-up.
    • The only ANA you list, 1:40, is barely elevated.

      Yes, my other dr. didn't choose to run ANA because she said my ESR being so low (26 out of Range 0-20) wouldn't yield a positive ANA. She gave up on me. I had to ask her for a referral to another Infectious Disease Dr. It was the GI (2nd one) who finally ordered the ANA for lack of any other diagnosis when my 2nd Colonoscopy came back clear as well as my 2nd Whole Abdominal CT w/triple contrast. (I only have a small renal cyst).

    • The only ANA subtype you list, ANCA, was negative. This is associated with vasculitis. There are others much more associated with lupus.

      Yes. I know. They haven't been ordered yet.

    • You get a LOT of infections: UTI in Aug 2014, kidney infection Sept 2014, and your last line above your labs says "lots of bacteria". Also, the last urinalysis you cite also mentions casts, RBC, and WBC.

      Yes. I've been having infection after infection to the point that dr's (I've seen 13 of them so far) just look at me and shake their heads and say I've had too many antibiotics and that something seems to be affecting my immune system. No kidney pain, and no protein showed up in last urinalysis. (I've had about 8 urinalyses over the past 4 months).

    • You've been hammered with antibiotics, to the point of testing positive for the C. difficile antigen. Also, as we women know, antibiotics themselves can unfortunately cause additional infections, like yeast.


      Yes, 'tis true.

    • What was the "pelvic abcess" found on 9/16: was it diverticulitis, a GI perforation, or what? Did the doctors correlate it to your continuing right-side abdominal pain? Is your "right-sided abdominal pain" anywhere in the region of your appendix?


      OB diagnosed it initially as pelvic abscess. It doubled in size in one weak and was causing me to shake, tremble, have higher fevers, etc. She later decided that since the Klindex got rid of it (all the pus came out 5 days into the Klindex treatment), that it may have been a corpus luteum cyst instead. I'd had a delayed menses that time and was also hospitalized during that month.


    I'm only a patient but I really don't see many, or too strong, lupus pointers in what you know so far, so Ladybud's comment about further lupus-oriented* tests being needed makes total sense to me, too. (*As the 11 criteria suggest, there is no single test for lupus. Also, its lab signs are on/off, so diagnostically it's very challenging.)


    :0) I know. I have had no skin manifestations other than the tiny hives that pop up randomly on my feet/ankles/arms. They are extremely itchy. At first I related them to UC, but since UC is not active at this time, I guess they relate to whatever is causing all my other symptoms.




    Since so many of your episodes involve UTI's and kidneys, I also wonder at the lack of renal/bladder ultrasounds (US) and 24-hour urine collection. For example, GI conditions like UC can dehydrate you, causing urine to become too concentrated, which in turn promotes formation of kidney stones.



    Dr's don't seem to think there is kidney/bladder problems so haven't ordered those tests.



    If you have frequent urinary misery in addition to your known UTI's & kidney infection, I'd also wonder about the possibility of IC = Interstitial Cystitis. (IC is an autoimmune.)

    Re your heart valve questions: I think mild regurgitation of heart valves is relatively common but that only a heart specialist can say how much concern is warranted when it's deemed "mild". (I'm unqualified to guess.) Same goes for your lung results (sorry).



    Saw Pulmonologist on Friday. He said that since the nodules were not in the bronchial tubes/breathing airways and since I'm not coughing, that they were indicative most likely of an inflammatory process such as SLE or the like. He told me he would talk to the Rheuma and tell the Rheuma his thoughts.



    I'm really sorry for all your issues and look forward to hearing more, including anything you find out during your Monday follow-up with your rheum. If you can get copies of all the lab results, you should, then feel free to post whatever catches your eye. Wishing you luck & sending warm wishes, Vee

    Thanks! Appreciate it much!

     
    Reply With Quote
    Old 12-20-2014, 07:06 AM   #8
    VeeJ
    Senior Veteran
    (female)
     
    Join Date: Feb 2004
    Posts: 5,711
    VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
    Re: I want a DIAGNOSIS for Christmas

    I've had so many of the same things! Several years ago, I started off with urinary irritability, yet spot urine test & urinalysis (which took several days) showed very high WBC's but a meaningless level of bacteria, so I was taken off the antibiotic that had been prescribed. Then urologist found multiple kidney stones (had an US and did 24-hour urine collection) but deemed them eligible for passing.

    Fast forward 7 weeks: during pelvic at annual GYN checkup, I screamed in pain. Two days later: zinging painful POP in lower LEFT side of abdomen, followed by fever, shakes, widespread abdominal pain & tingling, nausea, etc. My GP feared appendicitis---even though pain started on LEFT side before going widespread---and sent me to the ER. Fourteen hours later and after an abdominal CT, ER doctor dx'ed micro-perforation EVEN THOUGH none showed on CT (HUH? Widespread pericolonic inflammation did show, though---whatever THAT is), with the reasoning, "What else could it be?" Well, subsequent colonoscopy showed no signs of perforation.

    Aside. I do have lupus, milder side meaning no organ involvement. For 20+ years, I had GI misery yet repeated tests showed no evidence of UC, Crohn's, or Celiac. When I was finally dx'ed with lupus & started Plaquenil, my GI problems abated very quickly. GI bouts are common in lupus, much to my surprise. Honestly, I can't imagine all those GI bouts over 20+ years did no harm to my intestines: they can't have been helpful!

    Much to my fury, all above doctors failed to notice the ovarian cyst that had showed in my first US weeks before, also on abdominal CT done in ER. I believe that's about where my POPPING pain originated shortly after the pelvic exam that caused me to shriek. Now I have that cyst checked regularly (it's still there).

    I still don't know FOR SURE what triggered the my pericolonic inflammation; I'm only sure of the ovarian cyst and the stones, that I was actively passing stones (# of stones had decreased on the next US), and that my sed rate & CRP were meaningfully elevated.

    Further complication, a full 2 years later: one stone actually turned out to be a kidney cyst, a rare type, almost always benign, associated with stone formation. Interestingly, this type of kidney cyst is prone to infection.

    For the record, I was a very low-odds presentation of lupus, only the anti-Ro autoantibody. In those patients, ANA may be positive or negative, so a low or a negative ANA isn't the be-all-or-end-all in that subset of lupus. GI problems are common in this group. Also common: extremely photosensitive SCLE rashes. (I had the annular SCLE rash for 8+ years, confirmed by a lupus band test.) Also, I'd had problems all my life, since early childhood, including a terrible reaction to an antibiotic that almost did me in during one of my bouts of pneumonia. At age 9: widespread bullous (watery blistery) rash. At age 13: first bout of extreme pain along long bones and in joints, low fever, elevated sed rate, leukopenia (depressed WBC). I've had episodic pain ever since.

    When you read the "stickies", scroll down after you see the 11 diagnostic criteria. After those are a set of so-called "alternative criteria". (I matched 11 of the 14 of those.) Your rheum's results will be very interesting to get, so good luck & please let us know what is found. Hang in there, Vee

     
    Reply With Quote
    Old 12-20-2014, 08:44 PM   #9
    mystrydiagnosis
    Junior Member
    (female)
     
    Join Date: Nov 2014
    Location: Southeast Asia
    Posts: 40
    mystrydiagnosis HB User
    Re: I want a DIAGNOSIS for Christmas

    Thanks for your note. I'm home from church now and am upset because a Dr. friend in the church (Pedia Nephro) told me she doesn't think I'm sick and that it's all in my head. It's so frustrating when they tell you that. But at least my other Dr. friend (Pedia Cardio) told me that there's nothing to worry abt with the 2D echo findings. Just as long as the level of regurgitation is only mild and the heart size is OK. Both docs still thinking TB even though my drs. at the hospital whom I'm paying to see are convinced that since the Quantiferon TB Blood test was negative that I'm clear of that. One thinks it strange that my dr. (pulmo whom I saw Fri) is thinking SLE or some form of autoimmune and that he sent me to Rheuma. We'll see what Rheuma says. My Infectious says possible Connective Tissue Disease and to continue seeing Rheuma. Infectious doesn't see me anymore--just asked me to e-mail him results. I think that's kind of him to keep up w/me just via e-mail.

    My bacteria counts are high... Last Urinalysis result: light yellow color, cloudy, 1.003 specific gravity, 5.5 acidic (never had this low before. Always 6.5 or 7.0 previously), normal urobilinogen, trace leukocyte esterase, 4 WBC (range 0-3), 1 RBC (range 0-2), 4 Epith. cells (range 0-3), 3 casts (0-3), bacteria 217 (range 0-50).

    prev urinalysis 11/17 Bacteria counts done two different ways: 71 (range 0-50) and 392 (range 0-278). It was after this the dr ordered the cultures. But since the cultures were polymicrobial (>100,000 acinetobacter lwoffi, Proteus Mirabilis 17,000/ml, Diphtheroids 6,000/ml read after 72 hrs.) and (Yeast Cells 13,000/ml, diphtheroids 4,000 read at 33 hrs.), they didn't test for antibiotic treatment.

    I do have sulfa drug allergy. Broke out in major hives when a child and given Lorabid. Since then have told dr's abt that so have had no sulfa drugs. Also had heart palpitations w/cefuroxime.

     
    Reply With Quote
    Old 12-20-2014, 08:56 PM   #10
    mystrydiagnosis
    Junior Member
    (female)
     
    Join Date: Nov 2014
    Location: Southeast Asia
    Posts: 40
    mystrydiagnosis HB User
    Re: I want a DIAGNOSIS for Christmas

    I agree that it's quite frustrating when you have symptoms and you yourself know something is not right and the dr's can't find what's wrong. I'm glad that I got so sick two years ago and had the colonoscopy at the time when my flare-up was the greatest (I'd had three days in which food just went straight through me and came out like water, looking like what I ate, or, rather, tried to eat. I ended up going to ER). GI saw the ulcerative places in my colon and gave diagnosis. But I read that sulfasalizine, which I took for 3 months at that time, can lead to lupus or problems like that. I was also on omeprazole for the gastritis.

    I've had intestinal problems all my life ever since getting amoeba as a child. Was sick then for two years, going to tons of drs to try to find out cause. Finally, they showed up on test and dr. gave me drug to take care of them. By then, then had damaged my digestive system. Then my system started attacking various foods and creating food sensitivities (the proper term--although most people don't understand that, so I use the word "allergy"). I can eat those foods (like wheat and milk) but will suffer adverse effects if I do eat them. (stomach ache, headache, sinus infection, etc.).

    I also had major fall down 13 wooden stairs in 1992. This created a back/neck injury which creeped up in 1996 as vertigo for 10 long months. And in 2000 as tendonitis/swelling (serious swelling, causing my Right and then my Left arms to turn purple). X-ray showed C3, C4, C5 in my neck were out w/bone spur, neck straight (no curve), and tilted to the right. The major nerve bundles at my neck were pinched, creating the issue with my arms. The zinging pain went down my arm at the top down to the middle 3rd and 4th fingers. This lasted 2 yrs. I still have flare-ups and deal with the pain from that daily. It's under control now, thankfully, as I'm a piano teacher. I couldn't play piano for 2 yrs. By God's grace, He gave me back my arms.

     
    Reply With Quote
    Old 12-20-2014, 09:05 PM   #11
    mystrydiagnosis
    Junior Member
    (female)
     
    Join Date: Nov 2014
    Location: Southeast Asia
    Posts: 40
    mystrydiagnosis HB User
    Re: I want a DIAGNOSIS for Christmas

    As result of that injury, my Right arm/hand is usually slightly swollen. Rheuma noted that on my visit last week and the joints in that hand were painful when he pressed them. I also had concussion in 2007 and broken toe this May. It takes me a LONG time to recover from something. The toe finally healed by August but has lingering pain sometimes.

    I feel pain in my right hip, but that hasn't been checked yet. we'll see what dr. says tomorrow...

     
    Reply With Quote
    Old 12-21-2014, 04:05 AM   #12
    VeeJ
    Senior Veteran
    (female)
     
    Join Date: Feb 2004
    Posts: 5,711
    VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
    Re: I want a DIAGNOSIS for Christmas

    Hi & wow, you're right, there's a lot going on with you. But I still don't understand your doctors not looking further into your urinary issues. Here's one paragraph from your latest post: Last Urinalysis result: light yellow color, cloudy, 1.003 specific gravity, 5.5 acidic (never had this low before. Always 6.5 or 7.0 previously), normal urobilinogen, trace leukocyte esterase, 4 WBC (range 0-3), 1 RBC (range 0-2), 4 Epith. cells (range 0-3), 3 casts (0-3), bacteria 217 (range 0-50).

    For the record, casts may be seen in lupus nephrotic syndrome, BUT there are many OTHER conditions in which casts are seen. I saw these cast types listed, but alas I don't know in what conditions each can appear: fatty, granular, hyaline, RBC, WBC, renal tubular epithelial, and waxy.

    [Another quote] Dr's don't seem to think there is kidney/bladder problems so haven't ordered those tests. Honestly, this stuns me in light of your many UTI's and kidney infections! As one example, what if this is a "functional" problem, i.e., something preventing progression thru the urinary tract, creating condensed urine that greatly increases probability of infection? In situations like that, you need more detailed tests results (24-hour urine collection) and imaging tests! Have you EVER seen a urologist or nephrologist? I'd really, really press for that if I were you.

    Re foods that bother you, milk and wheat: Were you tested for Celiac (gluten intolerance)? As for milk, I don't know whether there's an actual test for lactose intolerance, but maybe someone else here will know.

    Re your history: have you made a chronological list of your lifetime medical history? My 2nd rheum asks his patients to fax one in, in their own words, before their 1st appt. I kept mine brief by using sentence fragments & abbreviations. Whether or not this is autoimmune probably isn't known yet, but I think an ordered list could be useful to any specialist and to you, too.

    I hope more sense is made of this soon! Keep us posted. Sympathetically, Vee

     
    Reply With Quote
    The Following User Says Thank You to VeeJ For This Useful Post:
    mystrydiagnosis (12-21-2014)
    Old 12-21-2014, 04:23 AM   #13
    mystrydiagnosis
    Junior Member
    (female)
     
    Join Date: Nov 2014
    Location: Southeast Asia
    Posts: 40
    mystrydiagnosis HB User
    Re: I want a DIAGNOSIS for Christmas

    Yes, , I have everything typed out onto about 12 pg document now that I give to any new dr. I see. I have on that paper listed out all the questions they ask (i.e.--family history, personal history, drug allergies, food allergies, current medical history). I also have listed in tables in the back page all 10 (yes, 10) urinalyses and CBCs that have been done. It's advantageous that here in my country, the labs expect the patient to pick up all results and then take them to the dr. It's very handy, because then I know immediately what the result is and don't have to wait for the dr. to tell me. And the current hospital I'm working with has on-line retrieval service for labs--done usually within the day if common tests like CBC, urinalysis. I'm still waiting for results of the second Primary Immunodeficiency Test that dr. ordered. That one was supposed to take longer.

    I discovered the food issues on my own. At that time was seeing natural dr's/chiropractors for GI issues.

    As for the current urinalysis report, the dr. saw it when I e-mailed it in, but made no comment. I showed it to the successive drs (pulmo and rheuma that I saw last week). Pulmo saw me and promptly asked if I'd like to see a rheuma, so he referred me to his friend whom he called right away and was still talking with him by the time I'd gotten to the other building and gone up to the 9th floor. Rhema's comment was that I"ve had lots of infections and something must be going on in my immune system. Pulmo also saw me as follow-up for CT scan and told me he'd talk w/rheuma about his opinion on the findings in the lungs. (I'm having left-sided chest pain as I type this...sigh...it moves around all the time. Earlier it was my right hip, somewhere on right side higher, left elbow, left knee...etc. etc. bad headache for 3 hrs. now--probably will continue all night unless I give in and take tylenol, but i hate living on drugs. Try to go w/o them if I can).

    We'll see what dr says tomorrow. I think he'll order more testing.

     
    Reply With Quote
    Old 12-21-2014, 04:27 AM   #14
    mystrydiagnosis
    Junior Member
    (female)
     
    Join Date: Nov 2014
    Location: Southeast Asia
    Posts: 40
    mystrydiagnosis HB User
    Re: I want a DIAGNOSIS for Christmas

    Yes, I saw nephro at the beginning. She was the one under whom I was hospitalized. But the Urine Culture at that time showed NO Growth. She referred me to her officemate, a Urologist, when I told her 2 days after I got out of the hospital that I was having hematoria again. (just had some today, too, but it's not that common). Uro also referred me to the first Infectious Disease. The tests he ordered were clear, and both abdominal CTs were clear, except for tiny renal cyst that is stable at 0.58 cm only. Hence, dr.s don't think there's problem w/urinary system. I'm curious, though, as to why my BUN is low... Rheuma Dr. just passed it off as inconsequential because it's only one number below normal level.

     
    Reply With Quote
    Old 12-21-2014, 07:48 AM   #15
    ladybud
    Senior Veteran
    (female)
     
    ladybud's Avatar
     
    Join Date: Jun 2012
    Location: Colorado
    Posts: 6,123
    ladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB User
    Re: I want a DIAGNOSIS for Christmas

    I would truly caution you not to ask for "curbside consults" from people, even Dr. friends, who don't have access to your complete history and medical records/labs, etc. They should not be giving you any opinions without the whole picture in hand, and it is obviously upsetting when they conflict with what your Drs. are saying. I think these people mean well, perhaps are trying to reassure you, but are just adding to the confusion, IMO. I would wait until your new tests come in, listen to your Drs. and filter what you hear and consider the source. I think your rheum is on the right track and will be your best bet to get the big picture, then specialists can be consulted regarding specific issues, like the casts in your urine, etc.

     
    Reply With Quote
    Reply Reply




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 05:07 AM.





    © 2022 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!