Discussions By Condition: I cannot get a diagnosis.

Chronic pitting edema and several other problem? Any insights/suggestion will be greatly appreciated

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: Andy69
  • June 13, 2014
  • 10:34 PM

I'm a 45 yr old male who has been struggling with several ongoing medical issues for a few years now and yet I remain without a conclusive diagnosis.

I have pitting edema in my lower legs and edema throughout much of my upper body as well. I gain 10-15 pounds within less than 24 on days when I am retaining fluid more than usual. The edema never resolves but it does seem to improve occasionally. I've gone through extensive testing for liver, kidney, heart disorders that might explain the edema (echo, EKG, blood work, urinalysis, ultrasound, etc.). My cardiac workup was extensive and thorough

White blood cells/neutrophils have been chronically elevated for years (usually WBC is in the 12-15,000 range)

Very low total and free testosterone (untreated at this point). I'm not comfortable treating the deficiency with so many other symptoms occurring simultaneously. The endocrinologist I saw told me that the low T was being causes by pituitary problem, not a testicular issue, as per my blood work results (normal LH and FSH, if I am recalling correctly). He sent me for an MRI, assuming he'd discover a tumor, but the scan was negative/normal

Recently diagnosed via colonoscopy and endoscopy with severe chronic erosive gastritis w/signs and a mild patch of colitis but I neither have the H.Pylori infection nor the ulcerative version of the colitis. Seems my GI system is simply inflamed. I began taking PPIs but they didn't work and worsened many of my digestive issues, along with the edema, so I stopped taking them. Stools are loose and occasionally watery but not frequent. When I first became ill with these symptoms several years ago, I did have colon/endoscope but they were both negative for the inflammation I am currently dealing with

Facial rash that looks like one of those lupus skin eruptions but I've tested negative for lupus. The rash waxes and wanes along with other symptoms. On days when I am feeling poor, the rash erupts on my face, forehead and chest

Mild pancreatitis was discovered on one occasion, but the cause was never explained to me. Since then, my enzymes have been normal with no sign of pancreatic inflammation on abdominal CT

I neither drink nor smoke and am not diabetic or overweight. Prior to developing these symptoms, I felt like a very healthy and fit person and my yearly physicals were very unremarkable.

Currently, I live with fairly severe digested distress, almost 24/7 (particularly gnawing pain in upper left side abdomen that radiates to back). The edema seems to dry me out and is very uncomfortable. Energy levels are terrible and my appetite borders on non existent most days (feels like I have limited saliva and mucus membranes are very dry throughout my body), though I force myself to eat to ensure proper nutrition. I also experience muscle aches and pains while performing simple tasks (arms ache while typing and washing my hair, for example)

My GP has good intentions (i've seen several specialists as well) but she's reached her limit in terms of a diagnosis. My next step is scheduling an appointment at the Cleveland Clinic with the hopes that I might get some answers there.

Has anyone every heard of a case similar to my own? These symptoms seem very bizarre and in many ways unrelated, imho. I sometimes think that they're suggestive of an a systemic autoimmune disease of some kind. Any ideas would be very helpful. I feel like I'm flying solo on this one, which is quite distressing thought

Sorry about the lengthy post but I'm trying to be as thorough as possible without inserting too of my own many subjective/vague complaints into the mix.



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