Hi my name is Rob. I am very newly diagnosed and very new to using any type of message boards or live chat etc. I usually frown upon social networking via the net...but I find myself very much alone lately because of my recent dx that was not dxd when it would have been a great help to me emotionally.
Basically I dont know what they have dxd me with specifically but what I do know is that because I have had chronic renal issues for over 20+ years apparently I over exposed my body to cortisol via my adrenal glands which were releasing the hormones because of the colic caused by frequency of kidney stones, infections intrusive procedures such as uroscopies, lithotripsy's stent placements and so on.
The past two to three years this renal genetic issue that I have has progressed to the point where I have been developing stones larger and larger at the rate of 8mm stones 15-20 times a year. I have been exposed to so many different therapies and specialists I began to become discouraged. Everytime I turned around I had another procedure and I lived with pain every day which the medications only covered and made my physically ill.
I met someone after a lengthy and bitter divorce of 15 years, and we were extremely happy. I had my 3 children from my other marriage and they lived with me and my new fiancee and I began to plan a new family.
Then one day I woke up and I found a different person looking back at me in the mirror. I was tired all the time, every muscle hurt I stopped exercising with my fiancee because I couldnt keep up at my old pace. I sweat for no reason at times and she would always tell me I was like a heater in bed, I would wake up every morning and have to change the pillow cases because I would sweat through. The Doctors told me this was normal because of my medications for my kidney and because of my frequent renal infections. So I moved forward just thinking that my fiancee 10 years my junior was just more spry than my old 40 year old body and I stopped exercising hoping some day to return after I was given hope by my urologist that we had some future alternatives to my renal issues.
So months passed and things only got worse, unexplained weight gain was answered by my Doctors as a result of water retention because of my right kidney being infected and constant UTI's etc. etc...blah blah blah!!! Then I was irratible at things that never bothered me before. I began secluding because I didnt know what was going on with me. Then the ultimate started happening and I had no sex drive AT ALL!! This was terrible as my fiancee had just returned from a tour in Iraq and we were so excited about starting a family and she wondered if I was no longer attracted to her. I kept SCREAMING at my doctors that something MUST be wrong and they just kept saying it was normal. I had been struggling with one particular renal stone that was 8mm and stuck on scar tissue in my upper ureter close to my kidney located about L4 on a flat scan. This stone had been treated over several months with 4 lithotripsies 3 stent placements and constant medication regimes to no avail. I had enough I started looking for another Doctor....well that was a big mistake in my small rural area because no-one wanted to finish something someone else had started.
Then months went by that I just couldnt get out of my own way...FATIGUE....sweats my whole system felt out of control...I was emotional overly sometimes and other times detached from everyone. I felt like I was having a nervous break-down...my mother actually told me once that it sounded to her like I was going through menopause!!!! (Go figure that one!!) Then I just was depressed for no reason and I couldnt explain it to anyone...other times in my life when I had stress I could handle it NO problem but now I just felt like hiding in a corner and disappearing.
All the time everyone including doctors just said it was my kidney issue and nothing else. Then depression just took over and I had a break down and was signed into a treatment center for MDD major depressive disorder. Everyone freaked including me! I was not this person that I had become what had happened to Rob? Oh he just woke up one day and went Crazy! My fiancee found out that same week that we had finally conceived, and of course she felt abandoned by my recent break from reality and ended our relationship because she stated she no longer knew who I was.
Every doctor kept telling me a different dx, now I was just plain Crazy...and they put me on antidepressant and I entered the world of the mentally ill. I still had all the same symptoms...getting worse by the day which are now exacerbated by the different meds they wanted me to take for my NEWEST dx of MDD with generalized anxiety disorder. I ended up moving out of my house after my fiancee had refused to be involved with my treatment and I spent the next few months couch surfing with different people untill one day I woke up with severe flank pain and dark blood in my urine and I was transported to a local hospital which was half a State away from where I had been for the last 20 years. A resident visiting the hospital from Tufts admitted me and put me through a bunch of tests I had never had before and then all of the sudden I have CUSHINGS! Which she explained to me that if undiagnosed in the past would have similar symptoms to major depression because of the cortisol and the adrenal issues etc. WOW I finally had an explanation!! But too little to late for all my friends and relationships that I just wrote off or they wrote me off because I was just plain COOCOO!!
I guess overall I want to know if anyone here has had a similar issue with the depression etc. and not being diagnosed. I cant understand what all this means for me for the future but I certainly would have been better off today if some other doctor had looked for this syndrome before I lossed everything and everyone.
Anyone out there with any similarities I would love to hear from you. I guess I am glad now that I know I just dont know which is worse being crazy or having cushings? Which by the way I have been told now I dont have MDD and I am not crazy!! Thanks for that one docs!!! Thanks for listening. SOMEONE PLEASE RESPOND!!!
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" and thanks for having such a helpful site on the net. Specially for people like me who cannot find good answers or good medical attention regarding suspicions of having Cushing´s. I am truly alone in this over here ( Costa Rica ) and i find this website to be my only aid trying to find out what i have and coping with my symptoms. Best wishes. "