Diagnostically deficient, please help

[mamabland]

I am a white female, 39 years old, over-weight - obese,  about 1yr ago was losing the wt, very athletic is my norm.12/07 symptoms of severe pain in my right flank area, 3+ bilateral pitting edema, weight gain, bilateral lower extremity pain, esp. rt foot, hx of surg X 2 removal medial/dorsal aspect tumor/ganglion cyst, with neuromas found/scraped, 2nd surg also removed benign tumor rt side of foot below ankle w/ tendon invlvmnt, all feel/appear a 3rd time.  Addtl s/s-  fatigue, malaise, gross hematuria x 12mo's. Uro consult,  per ultrasound, 5mm stone at UPJ, sched lithotripsy w cystocopy.  Before procedure, out of town when pain became severe, causing "splinting" per ER doc.  Per ER doc, not stone, possible hardened vein, recmd's 2nd check w/ uro, and rcmd Cons w/ vascular.  Re-eval w uro ,reviewed oot reports.  Insists is stone, proceed as planned.Litho done 3/08, no sand or other in postop urine.  No scope as machine was "down."  F/U uro 4/08,+ blood,  will scope if still + in July!  Have not gone back. + bld still, mult kydney infections,pain now more severe in rt flank and lower extr, w rt foot nodule swelling to golf ball size.  New sx's 07/08 - sores on breasts, and forearms, and face.  Cysts present in multiples in some, alopecia, Reynauds syn. occ.in fing/toes, digits vary, usual unilateral, w/ 2 to 3 digits inv. PCP suggests poss lupus.  Blood work and Renal u/s done, due to severe pain now, almost total inactivity due pain/fatigue (normally  healthy, active, mom of  2 little boys/husb, we jet ski, camp, boat, quads, etc. no more, in bed most days) RX now of MS contin 60mg, 2 q 12hours.  Good pain control, incr. activity, incr mood, so stopped MS, pain worse/sick, so now on again. U/S neg., ANA neg., no sig. findings yet, pyelogram sched'd.  Recent C-diff, dx. w/ flagyl tx. Any suggestions?  What are we missing?  I need help and cannot take this total change in who I am! Does lupus need +ANA for dx?  

[J.M. Keyes, MD]

It sounds like you had a lot going on with your health, and I hope that you hang in there, despite your frustrations and significant pain.

The American College of Rheumatology's “Eleven Criteria of Lupus” help make—or exclude—a diagnosis of lupus.

Typically, four or more of the following criteria must be present to make a diagnosis of systemic lupus:

-Malar rash: butterfly-shaped rash across cheeks and nose
-Discoid (skin) rash: raised red patches
-Photosensitivity: skin rash as result of unusual reaction to sunlight
-Mouth or nose ulcers: usually painless
-Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.
-Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
-Neurologic disorder: seizures and/or psychosis
-Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine
-Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
-Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
-Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it.

So, yes, you can have a lupus diagnosis and a negative ANA, if you have 4 other criteria.  If your doctor suspects a diagnosis of lupus, I would suggest you seek a rheumatology consult, as early treatment can make a difference, despite their being no cure for the disease.  

I would also talk to your urologist about getting cystoscopy, to rule out something like bladder cancer, that should be considered any time there is gross hematuria.  You may want to ask to have this done sooner than July since you have had ongoing hematuria for some time now.

Best of luck.

JMK MD

[mamabland]

Thank you for your response.  I will see about getting the cystoscopy done, since it was May of 2007 that the urologist said he would do it in July if there was still blood.  You would think that my current PCP would have thought of this already!  Will a pyelogram show you more than a cystoscopy or will it show totally different aspects of the renal emptying system?  
Thanks!
Terri

[J.M. Keyes, MD]

Hi Terri,
The pyelogram will show a differnt part of your renal system (eg- your ureters that connect your kidneys to your bladder), while a cystoscopy will give direct visualization of your bladder (to rule out bladder abnormalities that could be missed with the pyelogram).  
Good luck.

JMK MD

[mamabland]

Dr. Keyes,
Again, thank you so much for the information and feedback.  I have just one further question in regards to the kidney/hematuria issue.  My paternal uncle (my father's brother) had to have a kidney removed when he was around the age that I am now due to kidney CA.  He is alive and well now 26 years later.  Does this link increase my risk?  I know that some types of CA are heavily hereditary while others are not.  That is the only + family history for CA other than maternal grandmother having "spots" removed due to suspect areas on her skin.  Thanks again!
Terri Bland

[J.M. Keyes, MD]

hi Terri,

there are some hereditary syndromes that cause renal cancer, but they are very rare.  if you had renal cancer, there is a good posibility that something would have shown up on ultrasound, but CT can give a better look if there is concern about this.  
Go to www.cancer.org and search "renal cancer detailed guide" - this guide gives detailed info on risk factors, the different hereditary syndromes etc related to renal cancer.

JMK MD

[mamabland]

Wow!  With the recession/economy in the dumps, one rarely ever gets their $$$ worth from services offered.  You have been a wealth of information and incredibly helpful, caring and sincere.  Thank you so much for your guidance.  It is truly appreciated.  Any chance you practice anywhere in AZ?  :-)
Terri Bland

[J.M. Keyes, MD]

thanks Terri,
i appreciate your appreciation.  i love the dry heat but am now living with Florida humidity:)

hope things work out for you.

[mamabland]

I know it will work out.  I am too active, happy, and have way too much to live for to give up!  Mind over matter works - I firmly believe this helps and so right now my biggest concern is keeping the good attitude and not succumbing to the frustration and depression that can accompany pain, fatigue, and the unknown.  And thanks again, for your expertise as well as your positive thoughts.
Terri

[J.M. Keyes, MD]

you are welcome Terri.  that is a wonderful attitude to have, and will take you far and probably do more for you than any medication you could take.  i wish everyone looked at  life like that.  
best of luck.