This is a long post. I really apologize up front, but I felt I needed to include a ton of detail seeing that quite a few
doctors have not been able to figure anything out with me yet and my pain is really pretty bad. I tried to sort everything
and make it easy to read. I personally think it's kidney related, and possibly gallbladder related also.
I have been to my primary care doctor, the emergency room (including a GI doctor), a urologist and still have absolutely no
answers. I am starting to get worried. Here are my primary symptoms, then the rest of the story leading up to today.
Primary Major Complaint: Severe back pain on my lower right side towards the center of my back near my spine, below my ribcage area, and the main source of pain covers about a grapefruit sized area extending from my spine to the right a few inches. Pain level 8-sharp while moving around, 3or4-dull when sitting or laying down.
Secondary Major Complaint (resolved): Stomach pain moving from right to left randomly. Lots of burping and gas. Since the
doctors weren't coming up with answers, we did a bunch of Googling and figured out this might be aerophagia caused by a bad
setting on my CPAP machine. The doctors refused to listen to me about this and ordered a GI doctor for my back pain and
stomach pain. GI doctor agreed with me, and when I lowered the setting on my CPAP it was resolved. Back pain remains today, however.
-Pain started almost 3 weeks ago now. No heavy lifting, no wrenching back, just started one morning.
--First week constant dull pain level 3 or 4. Thought it was crappy hotel bed.
--Second week pain kept increasing, ending up at level 8-sharp pain when moving and level 3-dull pain when sitting or lying
--Went and saw PCP. Urine test done and blood found in urine, PCP sent me to the ER because of this, and also the pain was
becoming worse and not being relieved as much when sitting/lying.
--ER gives me multiple shots of Demerol which decreases the pain to about 5-6. I was also complaining about stomach pains
that I have been having which seemed to start around the same time. ER doc pushed on my stomach and since I reacted to a
right side percussion he said it's "probably appendicitis". I also passed out during a blood draw.
Note: I later found out many of the "doctors" I was being seen by were students, NPs and aides.
-%ER TEST ORDERED: CT scan which we thought was for kidneys. Turns out they used the wrong dye to find kidney stones, so this
scan came up "clean". My guess is the CT scan was actually for appendix, but they wouldn't clarify.
-%ER TEST ORDERED: Blood and urine (standard ER tests?). I cannot actually confirm they did AST/ALT tests along with these
tests because the doctors were very vague with me and didn't give details. I should have asked more questions, I regret not
doing this. Everything came back "normal" except blood in urine again.
--Admitted to hospital after 12 hours in the waiting room. Demerol not working anymore, so they switch to morphine. This
keeps my pain levels manageable.
--Attending doctor comes in and tells me everything looks fine, he can't find a problem and I should be discharged.
I asked to at least be seen by some kind of specialist since this kind of pain isn't normal and didn't want the ordeal to be
a waste. They kept trying to discourage me from asking for a GI doc saying he's unreliable and never shows up. GI doctor walks in right while they are saying this.
--GI doctor came to visit me, took one look at my chart and said my symptoms appear to be a kidney stone and they messed up
the CT scan by using the wrong types of dye and the urine/blood test appeared to be done wrong also. GI reorders everything
and suggests I see a urologist for ultrasound. He does not think it's GI related.
%GI TEST ORDERED: GI doc tells the attending doc to order a new CT. Attending orders CT scan with two types of dye, injected and drank. Urine, blood. X-Ray of abdomen. All tests show nothing significant. However, I recently heard drinking/injecting dye was again the wrong thing to do for a kidney stone/function CT scan, I am not familiar enough with this to know one way or another..
--Resident doctor comes in and again tells me he doesn’t know whats wrong and I should discharge and come back to the ER if
the pain gets worse or I get new symptoms. I felt hopeless with these people, so I took them up on the discharge offer. I
again regret this.
HOSPITAL SUMMARY: I got some pain medication from my 2 day hospital stay and no diagnosis. I did not get an ultrasound, and
possibly never got a correct CT scan.
Followed up with my PCP shortly after, who again tested urine and found blood and now bile in urine.
Went to urologist, scoped my bladder and found nothing. Did not do ultrasound. Asked me for a urine sample in a gravity
testing device(?). When I gave the sample, they came back in the room 10 minutes later and said "We didn't get the results
because we forgot to turn the device on. We think you probably have a pinched nerve." I have almost no symptoms of a pinched
nerve except for back pain: no tingling, no leg pain, no numbness, etc. Does a pinched nerve cause blood in the urine? Am I
missing something here?? I am really feeling like I'm either going crazy, or these people are being really neglectful.
I'm at about the 3 week mark now and still level 8-sharp pain and have no answers except for a haphazard suggestion that I have a pinched nerve; from what I'm guessing is a lack of evidence that it's something else.
I am begging for some suggestions on what to do. Please.
Here are a few more clues that can hopefully
-I have loose stools which float and are light brown.
-I do sometimes get more pain when eating. Not always, though.
-I'm on 6-7 Percocet per day which only marginally reduces my pain, especially when moving.
-I do not have a fever, in fact my temp has been consistently around 97.5F.
-I do not have pain radiating down my legs, or other parts of my body. Not extending down to my groin.
-I have had some night sweats and felt cold/warm at the same time on some nights.
-I have had some dark urine pass (in the morning primarily) a few times. Not often.
-I do not have burning or pain when urinating (until they scoped me, now it's pretty painful but it's from the scope)
-I do not have yellowing of skin or eyes.
One last thing.. since they said a pinched nerve, I tried a few back exercises:
-If I bend down to touch my toes I have no extra pain, however when I return to standing I *DO* get a "twinge" of pain. Can
this be a sign of a pinched nerve, or does it not really say anything other than I have pain when my organs are in a
ANY suggestions are appreciated. I'm desperate.
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