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Old 03-27-2012, 06:43 AM   #1
Junior Member
Join Date: Jul 2009
Posts: 14
ptm0331 HB User
Unhappy Help me get DIAGNOSED PLS! I CAN'T DIE YET :'(

Can you guys please help me out get diagnosed :'( I've been to 4 doctors, 2 emergency visits, multiple outpatient appts, just lost my Kaiser insurance last year, and now running out of money.

What I'm scared most are the rapid muscle wasting and rapidly growing belly I have.

Abdominal CT accdg to doctor, it's not water retention/ascitis but belly fat, I've been RAPIDLY AGGRESSIVELY losing muscle everywhere, I don't think it's ALS, I can still walk but my TONSILS are virtually gone, my facial muscle, my TONGUE looks atrophied on one side and feels strange, muscle everywhere else is shrinking, neck shrinking, abdominal muscle, arms, legs, thighs, feet, hands;

very FOAMY urine, my last urine test which had abnormal results only has 192 mg/dL protein which is not diagnostic for Nephrotic Syndrome BUT NOTABLY MY CREATININE IS QUITE LOW 0.81 last month, IT USUALLY IS 1.04 (last 2008), COULD THIS BE CREATINURIA??? HOW do you treat that? Kidney ultrasound revealed nothing. I had slightly elevated ALT liver enzyme,

sometimes my stool is pale. Again nothing conclusive in CT. First ultrasound result say just "fatty liver". I also have: hypertension, rapid heart rate. Thyroid is normal. Catecholamines normal. ANA normal. No diabetes. Actually could I have hyperinsulinemic hypoglycemia? My random glucose testing after eating yesterday was 89 (60-200)I took D-ribose 2 years ago and at one point I thought I was going to pass out (apprently it lowers blood sugar)

Had 2 bouts of pink eye for I don't know what reason.

Other symptoms:
Rashes on arms, wrist, hands that come and go every other day
Eczema-like scaling above elbows and on neck.
Get itchy feet when I take Vit. D3

I also have this unusual taste at the back of my throat similar to what low-carb people get, like almost a bitter smelly odor which I had when I tried doing the Paleo Diet (low carb). Could this have triggered it? Am I consuming up my protein instead of sugar? But my glucose is always normal and sometimes low even :'(

eGFR, BUN, seem to be all normal/within normal range. CO2 once a bit on lower end of normal range.

What could I be having? Please help :'( Other than Cushing, what else could it be, or the more practical question is what next test should I be asking for to save time and resources? I ask because I no longer have enough money for the testing, I might as well go ask for a head MRI to check the Pituitary and skip the 24hr cortisol test if it's gonna be false negative or inconclusive anyway. I can't die yet, I need to help out my mother and sister financially. PLEASE somebody thank you so much for your time



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Old 03-28-2012, 11:36 AM   #2
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Join Date: Jul 2009
Posts: 14
ptm0331 HB User
Re: Help me get DIAGNOSED PLS! I CAN'T DIE YET :'(

Hi if I may add the following:
never have drunk alcohol other than dishes with cooking wine. I don't smoke either. I've gone to Internists. Right now I'm going back and forth with either a kidney problem really, or Cushing's syndrome. Next step for me is probably get a PCR and low dose dexamethasone or 24 hr cortisol. I just don't have the money for it :'( Hopefuilly I can find charity outpatient programs. Wish I didn't have to think about money which delays my visits

Can i note something, I took D-Ribose 2 years ago one time and almost passed out. I didn't eat enough that day and came to find out that it can cause hypoglycemia and hyperinulinemia. I didn't start noticing the frothy urine until after that incident. What could this be?

Right now I notice that the urine has been having a stronger odor, and much foamier and frothier after 3 urine breaks. Before it would take overnight to have such effect.

I've never taken any steroids or hormones. However, I had severe acne then and took a supplement called Guggul / Guggulsterone. Apparently it is a plant steroid, I took it 2006-2008.

Other symptoms I experience today:
1. Diffuse hair loss all over body
2. I took a photo and compared my face from 3 years ago and I do indeed now have a round face :'(
3. When I take MAGNESIUM, ZINC, VITAMIN C, or PHOSPHATIDYLSERINE, I get acute headaches, migraine. Very painful. Could this be related to cortisol/ACTH in the pituitary? If so, does it mean one has too much cortisol or something? I tried taking C, PS to alleviate cortisol.

I'm not sure if it's the guggul that is causing it, It's been years, also it says it's a Farnesoid X Receptor inhibitor. Any knowledge on that?

Another question if I may to all, is Vitamin D a steroid too? It's a hormone right?
And are plant sterols considered steroids? Like Beta Sitosterol from soy or nettle root

Old 04-18-2012, 03:51 AM   #3
Junior Member
Join Date: Jul 2009
Posts: 14
ptm0331 HB User
Re: Help me get DIAGNOSED PLS! I CAN'T DIE YET :'(

Please help anyone

Old 05-02-2012, 06:44 AM   #4
Join Date: Apr 2012
Location: Ireland
Posts: 7
chessguy HB User
Re: Help me get DIAGNOSED PLS! I CAN'T DIE YET :'(

A good [place to start have all electrolytes (Minerals)checked
and the following Vitamin levels too.As you need a "ground base" to work from

vit B12 ,ferritin (iron) vitamin D 25 these we need to be in the upper ranges for optimal health.

vit D actually works like a hormone,its a big player .

Guggul should not be taken unless advised by an Ayurverdic practioneer, it is quite potent.

Zinc depletes copper so be very careful with zinc , only take if blood tests show it is required,under the supervision of a Doctor.

Any minerals taken need to be in the chelated form so the are actually absorbed by the body.

You would be well advised to stay clear of all soya products , and soya derivitives.
Soya is toxic period.It will seriopusly mess with thyroid peroxidase (TPO) your adrenals and thyroid functions, just google it.There are many medical articles on it.

yes Beta sisterol from soya etc, is a bio identical steroid,


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