Bad lab errors??? What would you do???

[Susan__0__0]

  : : I am a very complicated case as told by many doctors. I found some records that puzzled me one day and did finally approach my rheumy with these results on some
  : : Porphyria tests done in 1996.  These are the lab reports and what would you say to do?
  : : My doctors at that time ruled them bad lab errors...rheumie is having them repeated.
  : : Performed by Mayo Medical Laboritories 200 1st St.Rochester, Mn.55905
  : : TV=1900
  : : 24 hours  04-03-96
  : : PORPHYRINS QUANTITATIVE,URINE
  : : RESULTS:                                             NORMALS:
  : : UROPORPHYRINS(OCTACARBOXYL)   H 29 UG/24 HRS         < OR = 22(FEMALES)
  : : HEPTACARBOXYLPORPHYRINS          4 UG/24 HRS         < OR =  9(FEMALES)
  : : HEXACARBOXYLPORPHYRINS           1 UG/24 HRS         < OR =  4(FEMALES)
  : : PENTACARBOXYLPORPHYRINS         <1 UG/24 HRS         < OR =  3(FEMALES)
  : : COPROPORPHYRINS(TETRACARBOXYL)H 165 UG/24 HRS        < OR = 60(FEMALES)
  : : PORPHOBILINOGEN                  1.1 MG/24 HRS       < OR = 1.5(FEMALES)
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  : There are various types of porphyria, which are distinguished clinically and by pattern of porphyrin abnormality. I don't know how to interpret the data given, especially out of clinical context. You have provided no information about symptoms and/or findings on physical examination.
  : Porphyria is rare, and neurologic complications are not seen in all patients. Typically, one expects a neuropathy, perhaps some patterns are more likely than others.
  : Porphyria is not a rheumatologic disease per se - usually one thinks of rheumatologists as dealing with disorders having to do with autoimmune mechanisms. Gastroenterologists and liver specialists are more likely to be experienced in porphyria, as it results from a fundamental problem with metabolism of heme type molecules.
  : Good luck. It probably isn't a bad idea to have the test repeated - it is not at all uncommon to find abnormalities which are actually errors or simply meaningless in the context of symptoms presented. I hope this helps. CCF MD mdf.
  Thanks Doc!
  Did I mention I have "brain Fog" you are so right, I didn't write anything because I wrote in another post all about myself, not thinking you may not be the same doc replying, so sorry. I do have Polyneuropathy, Neurogenic bladder syndrome, terrible intestinal cramping, lately been blacking out, LP tomorrow at Providence hospital here in Waco,Texas by my Neurologist.
  I blled alot for no known reasons, distal and from within at times as well, also bleeding every 7-10 days, my OBGYN doc is puzzled(we have tried Estrogen(allergic), birth control(nothing changed), progesterine(my body does not produce anymore,no changes)he is recommending a new shot, dont know name till Aug 6 that will stop all this.
  I am having terrible memory problems, cant even remember where imgoing at times, just like my mind goes blank then freak out when I dont recognize surrounding area(doc says no long distance driving till we seewhats happening, even kids have to remindme where I am going)I get what I call ice pick stabs in head at times, neuropthy is only getting worse for some reason,my Sjogrens also is present at time, bladder ishaving terrible spasms, I was catherizing for year and half and my urologist had said no drug willhelp because toomuch nerve and muscle damage after two tests 6 months apart called EMG & CMG. Iam on 40mg Pred now for last two months and my bladder is functioning on own again(yippee), but thepain reminds me of why I went to doc in first place 6 years ago.
  I get terrible acidy stools, like what I describe as baby stool colour, and doesi t tear me up, this is very commoninme for years, I sit in tub and cry so many a times, afraidto eat anything much anymore, all the foods I used to eat that are healthy seem to tear my inside up as well as hemmoroids (hemorrhoids) and distal bleeding as well.  I am also having terrible kidney pain since January,tests run, basic run all ok, may need biopsy. I am swelling constantly in legs,even now if I touch legs it leaves a dent in them, like it doesnt go right away, so strange, did contact my urologist, will see me Aug 6,another doc, mine ison vacation, taking now a drug called Triamterene/HCTZ 75/50, but by end day my legs look like pillows and kidneys are what are screaming! My feet go sonumb and tinglineg and now hands and arms are doing same thing constantly.
  I have rambled enogh, just seems we ought to ge t to the bottom of this and get the treatment I need,my neuro is saying this is a Lupus thing, but wants to rule out some things with these tests. Mri still to be done, I could NOThang in that thing and have to have rescheduled, I hope they have an open one somewhere! Thanks doc for allyou do for so many, I need a plane, your place soundslike they know hwat they are doing!Susan
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Thank you for your confidence. A bit closer to home, Dallas is only 100 miles away from you in Waco. Try UT Southwestern Medical Center.
In Houston, try Baylor Medical School or UT Houston (all in the Texas Medical Center complex). San Antonio also has a medical school.
Whether you come here (which you are welcome to do) or pick a place closer to home, you are more likely to get someone familiar with the rare disorders if you stick with an academic place (such as a medical school).
With so many systemic problems, an internist or perhaps a rheumatologist might be a place to start. For specific neurologic problems, you might see a neurologist, but that won't be sufficient to cover all bases and you should still see the other.
Good luck. CCF MD mdf.