Ongoing Medical Condition for 3 years, Still No Diagnosis

Hormones
1

Wondering if someone has ever had/seen a condition with the following symptoms. I’ve been unable to get a diagnosis from multiple doctors over the last 3 years, so thought I’d ask here:

-Always Thirsty (Water does not help/makes problem worse)

-Inability to work out (Sweating makes problem worse)

 -Tension Headaches/Migraines

-Muscle Contraction Issues (Extreme tightness/Tetany)

-Muscle Twitching (Arms, Legs, Eyelids)

-Loss of Flexibility (Cannot stand straight or hold head up).

-Weak/Light-headed, but never tired (cannot sleep).

-Constant wired feeling; Inability to feel calm (morning to night)

-Disorientation/Confusion and Poor Concentration

-Digestive problems (GI Doctor said I had low Stomach Acid; Stomach Acid is made from Sodium)

-Body is always internally hot (eating makes it worse).

-Dry Skin

-Pins and Needle sensations around body

-Drinking makes symptoms worse

I've looked into and tried many medications and supplements. Increasing my sodium has been the ONLY thing that seems to ease my symptoms, but I'm still struggling . I'm trying to figure out if there's a certain way to treat this at home because doctors haven't been able to diagnose me and, therefore, haven't been able to treat me. Previous blood tests have indicated that cortisol levels (adrenals) were very high. Sodium plays a role in maintaining healthy cortisol levels, so this may also be an indication of hyponatremia.

What do you guys think?

2

Have these doctors done urine tests or just blood tests that your cortisol level is high? Do you have a moonie, round face, a buffalo hump, have you gained any weight? Do you have mood swings, are you depressed? Yoursymptoms are odd some of them, but all Cushings patients do not have the same symptoms. Some of the symptoms sound like either diabetes, poor concentration, and excesss thirst and fhe tingling ..or kidney problems.

3

The high cortisol results were from a hair analysis test I had done a while back. I don't have a moon round face, but the muscle contraction problems have made it hard for me to hold myself up straight which has messed up my Jaw structure. Ive also tested for diabetes, but the results came back negative.

There are a lot of things going on but the biggest problems I have are muscular/neurological related... My body is constantly tight.. I can't fully extend my hands and I've lost flexibility in my neck, which makes it hard to talk. I'm also extremely weak/light headed/faint (always feeling like I'm about to pass out) and food/water and makes it worse.

It feels very much like a deficiency that's not being picked up. I'm not counting anything out though.

4

My goodness how horrible sounds very complicated x sodium levels are usually raised in pituatry cushings . Adrenal Cushings I think is the same . This is a hard one the wired can't sleep thing and excessive thirst sounds cushie ish  and or related diabetes insipidus which is totally different to normal diabeties in tests and diagnoses all the neurological stuff could be from electrolyt  imbalance but cause of the wired thing And neurological stuff I would think brain , but no moony  face of weight gain mmmmmm what really confuses me is the muscle tightness ,Cushings get weakness not so much tightness .There is an adrenal Tumor called a pheochromocytoma that could make you hyper my goodness I'm not surprised they're baffled .  Could this be Ms cause a lot of it sounds like it but then some doesn't .Do you think all this  is related to 1 thing ?or perhaps a few different things I dunno what tests you've had so sorry if you know already it's  none of the things I mentioned really would love to help u crack this  xxx

5

Or maybe check hypothalamic Tumor that could account for most of what u say x 

6

Wow, you certainly have a long list of symptoms.  I looked up Hyponatremia and it says that it could possibly be caused by drinking too much water.  Many Cushings patients get Diabetes Insipidus, which is nothing to do with sugar levels , it means waterfall.  I drink a lot in the day and used to be up to wee often in the night.  Having been diagnosed with this rare form of Diabetes I can now drink water as much as I like but take a tablet at night to stop me weeing and getting dehydrated.  Might be worth asking your Endo or GP about this.