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Dear Dr. Stoll,
I am a 39-year-old woman, 5' 6" tall, apx. 132 lbs, a 2nd-career graduate student in biology. I have had IBS since my early teens. Last year I had a very bad flare-up that nearly caused me to starve to death, but I was eventually able to get back on track with a high soluble fiber diet. I have been managing the IBS since June 2004 with acupuncture, Chinese herbs, and tincture of opioid as needed for outbursts. I also have a very mild MVP with dysautonomia, which is managed with Toprol XL 25 mg/day, and two degenerative eye conditions, Retinitis Pigmentosa and autoimmune uveitis.
In late September 2004, I began experiencing right flank pain. The pain radiates down to the lower right quadrant, around to the groin, and in extreme cases, down the inside of my right leg. Its severity ranges from something like nausea in my back, more diffuse and general, to a more focused sharp strong pain.
The pain started in my gut, with a severe IBS outburst that produced atypical bright orange fatty stools. I continued to have diarrhoea, and the pain seemed to move to my urinary tract. I did not have pain upon urination, but I had to pee all the time, and my kidneys hurt. My urine samples showed microhematuria, but no bacteria. I was tested for multiple digestive-tract pathogens, all with negative results.
After a few days, the pain focused on the right side. When it did not go away in a week or so, and the microhematuria continued, I asked to be put on antibiotics in case I had a kidney infection even though my urine tests were negative for bacteria. I was given Cipro, since I am allergic to Sulfa drugs. I took probiotics to offset the negative effects of the meds. My aunt says I felt a little better while I was on the antibiotics – I don’t remember myself. However, the pain persisted. In November, after a trip to the emergency room for pain, I also began to take narcotic pain-killers. In October, November, and early December, I had 3 CT scans, an IVP, a hida scan (specific gall bladder function test), a lasix renal scan (specific kidney function test), and numerous blood and urine tests. My gall bladder and kidneys were functioning normally, and no kidney stones were visible, but I had ongoing microhematuria. I then had an MRI to look at my spine, which showed a partially bulged disk at the lumbar-sacral border, some degenerative disk disease, and two cysts, one associated with my spine and the other with my kidney. The renal cyst was re-examined by ultrasound, and it was found that the cyst was just my gallbladder, which had been misidentified as a cyst on the MRI. The other findings were determined to be unremarkable. At the same time, my urologist ordered a hematuria screen to determine the origin of the microscopic blood in my urine. This test pinpointed the origin of the blood to my kidney (“dysmorphic erythrocytes indicating mild glomerular and/or renal tubular bleeding”). It also showed significant bacteriuria and uric acid crystals. I was then sent to a nephrologist who said he thought the problem was not in my kidney. He did blood tests for glomerular disease (negative) and told me to see a chronic pain specialist. The pain management specialist gave me a basic neuro exam, and told me that he believes I have micro-stones in my right kidney and that I should take allopurinol to prevent the formation of future stones. He said he believed this to be true because I had a normal neuro exam and the pain followed the course of my right urinary tract.
That’s where I am now: I have two opposing diagnoses from two doctors who are not talking to each other, and a GP who can’t seem either to bring them together for a conference call or pull the data together herself. The GP left on Friday for a two-week vacation. I have set up appointments with two other GPs, and I have also made an appointment with a well-respected urologist for January 14, but I feel like I am grasping at straws. The pain gets worse and it gets better, but it never completely goes away. I myself believe that there is something wrong with my right kidney, either kidney stones as has been suggested or possibly an entrenched low-grade infection of some kind. I have wondered out loud if this could be related to the IBS, possibly by increased intestinal permeability, but no one has seemed interested in that line of inquiry. What do you think, and do you have any suggestions for me? I want very much to get back to my coursework and my lab bench.
With thanks for your time and attention,
Sincerely,
HLO
In Reply to: link between IBS and kidney pain? posted by loshakova [2224.1399] on December 21, 2004 at 01:11:38:
Hi, HLO.
What a story! My strength (and the strength of the holistic approach to this stuff) is stepping back and looking at the pattern of EVERYTHING that is (and has been) going on. The point os to see a pattern that has been missed and approaghing the total problem from a much deeper level. This is PRECISELY what we allopaths are still NOT taught in our basic training.
Everything I have seen in your excellent description is, at base, an autoimmune condition. See
The Second Brain" by Dr. Gershon. The smoking gun is LGS.
Remember that simple anatomical proximity of the inflammed colon to the kidneys could cause everything you are experiencing with your urinary tract! This is probably the LAST thing any (non-holistic) urologist would consider as a cause.
You are far advanced in you process and I will be incapable, at a distance over the internet, to do more than point you in a more effective direction.
First, you need to have, in your possession, copies of EVERYTHING you have had done so far. While you are getting that stuff together you can be finding the best holistically inclined physician, within a reasonable distance, to see you in consultation. See the holistic practitioner archives (concentrate on the FMU resource) for how to find that professional. If I knew where you lived I might know someone in that area personally.
In the meantime, in my opinion. you have had more than enough expensive evaluations and you might save your money for the holistic consultation.
Let us know what you learn.
Walt
In Reply to: Re: link between IBS and kidney pain? (Archive in autoimmune.) posted by Walt Stoll [9.1465] on December 22, 2004 at 06:36:55:
Dr. Stoll,
Thank you so much for your quick response. You are right -- I haven't been able to get any of my doctors to consider the problem holistically. I would love to know the name of any holistically inclined physicians you are personally acquainted with in my area. I live in Baltimore, MD; I don't drive, so the easiest areas for me to access are Baltimore City and Baltimore County. In the meantime, I will consult the FMU resource you mentioned (thanks for pointing it out -- I missed it before).
I have requested and received copies of all my medical notes and test results since September.
Best wishes for a happy holiday --
HLO
In Reply to: link between IBS and kidney pain? posted by loshakova [2224.1399] on December 21, 2004 at 01:11:38:
Dr. Stoll,
As fate would have it, there was only one practitioner on the list in my area. Her name is Janine Blackman, and she had an opening on January 3, so I took it. I also read the information on Functional Medicine on the IFM website, and it sounds like just what I have been wishing for. Thank you again for your suggestions. I will certainly let you know how things turn out.
Do you think I should arrange to have my films sent to Dr. Blackman's office in advance of my visit? I can bring everything else with me.
best
Heidi
In Reply to: ps (IFM listing) posted by loshakova [2224.1399] on December 22, 2004 at 09:58:27:
Thanks, Loshakova.
Have the films sent ahead if your docs will not give them to you. Having them in your own hands is the safest way. Nowadays, when the originals are kept in the examining office and copies are made for the patient, there is no excuse for not handing them directly to you!
Good luck.
Walt
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