Medically, I am an enigma, to self and countless physicians - Need HELP
June 1, 2021 10:57 AM   Subscribe

IKYNMD - but am out of resources, emotionally and physically. I have no other alternative but to ask for some advice from the hive mind on what this looks like. After a few years feeling really bad on every level with random and seemingly unconnected symptoms, this week I once again landed in the ER with a severe bout of abdominal pain, nausea and radiating pain towards my left breast, near the rib.

Based on the findings of the abdominal ultrasound - fluid in my lower right abdominal area and stomach, a CT was recommended. Am opting if possible to go the MRI route, due to the radiation issue. Have had many CT's the past. If I have no alternative, will have the CT - or PetScan.

By the way, if you feel someone outside MetaFilter who can chime in on what this, please feel free to share. This is baffling to me but no one seems to know at this point, neither primary or the countless doctors I've seen till now what's going on. Also, my last question here was about the Kappa Light Chains. They've since increased. I asked to redo the test to see if the first results were a fluke. So no, they' weren't a fluke. I have a hemo doc appointment for next month.

So, medical sleuths - this is what is going on:

Post-menopausal female, 160 lbs

2 cysts on my liver, no change over the years
Fatty liver - gone as of last ultrasound and it appears that liver is normal size and texture
Elevated leukocytes
Elevated neutrophils
Elevated Kappa Light Chains
Decreased MCHC
Elevated Amylase
Elevated Cholesterol, Triglycerides, HDL
All other liver enzymes normal
Kidney panel ok
Electrolytes a bit off - sodium was lower than usual but could have been dehydrated
EKG - normal sinus
Liver: have 2 hepatic cysts. Had NAFLD which now according to last Ultrasound is gone. No trace of it. Liver is normal and homogeneous.
ANA - negative

Findings on last ultrasound:

Minimum amount of fluid in pelvis and right abdominal cavity

Main Symptoms
Colicky pain
Lack of appetite
Occasional shortness of breath
Occasional wild blood pressure fluctuations from low to high - ranges anywhere from 90/60 to 150/90. Most of the time it's low normal 113/70's.

No allergies
Some weight loss but nothing severe.
No smoking
No major alcohol consumption
No recreational drugs

Medical history:
Normacalcemic primary hyperparathyroidism (ongoing, no surgery)
Mitral regurgitation, left ventricular dysfunction grade 1
Numerous episodes of superventricular tachycardia
Raynaud's - fingers and toes are constantly red and swollen even in summer
Venous Doppler findings: Severe venous deficiency on both lower limbs

Am on no medications. Self-treat with minerals for electrolytes, vitamins, herbs as symptoms arise.

That's pretty much it. What does this sound to you like? I have appts set up for next week. Am out of ideas till then and want to prepare with some knowledge gleaned here. Thank you anyone reading this.
posted by watercarrier to Health & Fitness (16 answers total) 2 users marked this as a favorite
How frustrating! I'm sorry if this is a simplistic idea but have you tried a food elimination diet? In particular if you eat dairy, you might try to cut that completely for a month and see how you feel. Dairy has been linked to inflammation and a variety of other issues. (I would suggest cutting all animal products ideally, but I understand that is a bridge too far for many.)
posted by Glinn at 11:13 AM on June 1, 2021

To rule out pancreatic cancer, a CT is preferred to an MRI (the pancreas is somewhat challenging to image).
posted by praemunire at 11:33 AM on June 1, 2021 [5 favorites]

Check out the subreddits listed here:

And best of luck to you. I cannot imagine your frustration. I hope they can give you a good lead.
posted by metabaroque at 11:37 AM on June 1, 2021 [2 favorites]

I assume they've ruled out gallstones, if they've done all the other liver stuff? Also have you had blood panels done by a rheumatologist for autoimmune stuff generally?
posted by edbles at 11:38 AM on June 1, 2021 [1 favorite]

Does this sound familiar? Or this?
posted by tafetta, darling! at 11:45 AM on June 1, 2021 [1 favorite]

Response by poster: @edibles - ANA and rheum factors were negative. Gallstones ruled out. Liver looked ok.

Adding - I test positive for CMV, EBV, Herpes 1-6 antibodies
posted by watercarrier at 11:46 AM on June 1, 2021

Response by poster: @tafetta - could be. Had micro hematuria for years, then it stopped. Also have, verified by MRI done a few years back Phleboliths in my pelvis. Nothing was done about it. Nobody said it could be anything. Now I have fluid in my pelvis - wondering what that's about and if it's connected.
posted by watercarrier at 11:54 AM on June 1, 2021

Response by poster: EDIT: PCR test done was positive for Blastocystis Hominis and Dientamoeba fragilis - no treatment was ever given.
posted by watercarrier at 12:34 PM on June 1, 2021

I'm afraid I can't shine any light on what might be going on, but situations like yours are where the Mayo Clinic excels: physicians from multiple disciplines working in concert rather than separate specialists looking at matters through their own lenses. Since you have plentiful test and imaging data to offer, perhaps you might consider looking into getting an appointment. Information is here. Other places practicing integrative medicine might be similarly helpful.
posted by carmicha at 12:43 PM on June 1, 2021 [1 favorite]

Toxicologist here. On a lb, but I encourage you to stop taking over the counter vitamins (unless you have an undisclosed but bloodwork-diagnosed vitamin deficiency) and herbal supplements (even if your physicians know that you take them based on self-reported information). It is not an uncommon experience for mysterious signs and symptoms to resolve after discontinuing one or both of these (esp. in the case of herbal supplements—that market is entirely unregulated unless a manufacturer is caught adulterating a formulation with an undisclosed active ingredient).
posted by late afternoon dreaming hotel at 12:52 PM on June 1, 2021 [24 favorites]

landed in the ER with a severe bout of abdominal pain, nausea and radiating pain towards my left breast, near the rib.
This happened to me a couple of times within a month, it turned out to be a neuroendocrine tumor in my pancreas pressing on my stomach. (The left breast/rib pain is where your stomach organ is, though any torso pain above the bellybutton means you should go to the ER to rule out a heart attack.) Sometimes pain attacks like this are described as "carcinoid syndrome" when you have a NET.

I described it in this comment but the TL;DR is: neuroendocrine tumors are often so tiny they don't show up on scans, so it requires a blood test to diagnose. Ask for a test for chromogranin A.

(I also have been diagnosed with fatty liver based on imaging, but my oncologist isn't sure if it's actual fatty liver or just the many, many, tiny tumors I also have in my liver. I also have a couple of regular-sized liver tumors to make it interesting.)
posted by quartz at 1:55 PM on June 1, 2021 [2 favorites]

I also second the Mayo Clinic recommendation.
posted by quartz at 1:57 PM on June 1, 2021

Oh, also, NETs light up on PET scans, so if you end up getting one of those as you mentioned, that might tell you. They're expensive though, so insurance can be tricky.
posted by quartz at 2:21 PM on June 1, 2021

Get checked out for multiple myeloma if you haven't already--the elevated Kappa chains and the high calcium levels you've reported are symptoms.

Mayo Clinic diagnosis link
posted by kingdead at 2:40 PM on June 1, 2021 [1 favorite]

There's no mention of high calcium levels in the post--electrolytes are described only as having slightly low sodium, and the hyperparathyroidism is described as normocalcemic.

I urge you to give serious consideration to late afternoon dreaming hotel's suggestion above. Dietary supplements are not regulated by the FDA in the same way that medications are. This is from the NIH Office of Dietary Supplements:
The U.S. Food and Drug Administration (FDA) does not determine whether dietary supplements are effective before they are marketed. ... Supplements do not require [FDA] approval. Supplement companies are responsible for having evidence that their products are safe, and the label claims are truthful and not misleading. However, as long as the product does not contain a “new dietary ingredient” (one introduced since October 15, 1994), the company does not have to provide this safety evidence to the FDA before the product is marketed.
There is no reliable way to know that a supplement contains the advertised ingredient in the advertised amount, nor can you be sure that it will do what the manufacturer claims it will do. There's also no way to know if different supplements could potentially have dangerous or simply counterproductive interactions.

I wish you the best of luck in quickly getting to the bottom of your symptoms.
posted by jesourie at 4:59 PM on June 1, 2021 [2 favorites]

Could it be something like this?
posted by Amy93 at 9:12 PM on June 1, 2021

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