Kidney Disorders Community

I have asked every single one of my doctors, nurse practitioners, PAs, pretty much anyone who'll listen, yet NO one has a clue what is causing these symptoms and I'm sooooo sick of dealing with it!

I have myriad chronic health problems: Type 1 Diabetes since 1978 (on pump 4+ years); Chronic Unspecified Abdominal Pain (Possibly/likely Gastroparesis depending whom you ask) controlled with narcotics; a history of partial and total bowel obstruction due to adhesions and, finally, Stage III Renal Failure with Chronic Kidney Disease--surprisingly due to blood pressure rather than 35 years of Diabetes. I also have a plethora of peripheral neuropathies and have lost the great toe on my right foot due to a bone infection.

I'm 50 years old, 6'4", 280 lbs. I shattered my right tib/fib just above my ankle in 2009. 3 surgeries and 18 months later, I had gained 120 lbs. I've lost half of it with 60# to go. I walk 0.5-0.75 mile every day (the dog won't give me a day off!) I'm 100% disabled due to the kidney problems. I'm not on dialysis. So far, my kidney function (GFR) is ~32-35.

I'll be minding my own business, not doing anything overly stressful or physical, e.g. reading a book. Suddenly I will feel like I have a severe sunburn over my entire body. Sometimes I'll experience tingling in my chest. After 30 sec-1 minute, I break out in rivers of sweat--I mean SOAKED from head to toe. A couple of minutes later, I'm freezing. 3-4 minutes later, I'm fine. This happens, at worst, every 10 minutes or, at best once or twice a day.

There is no pattern with my blood sugar: It might be 130; 250 or 500. I've had stress tests, my heart is tip-top. I've had my testosterone checked, it's fine. I just endured urodynamics and a cystoscopy. I'm due for a colonoscopy and an endoscopy the end of July due to chronic nausea. I'm running out of places to have tubes/cameras/sailing vessels inserted.

My primary, endocrinologist, nephrologist, pain management, neurologist, ophthalmologist, therapist---NOBODY has any idea what this is. My primary insisted I take nitro. The one time I took it, I had a headache for a week and STILL had the sweats. The only common thread I can see is if my potassium level is elevated, the symptoms seem to occur more frequently but even that has been pooh-poohed by all the above.

I've checked and cross-checked my medications on my own and with my pharmacist. Nothing is apparent there, either.

I cannot believe that I am the only person out of the 10 or so billion people on this planet who suffers from this! If anyone has any idea what this might be, PLEASE contact me.

Thank you, sincerely,
JG