Discussions By Condition: I cannot get a diagnosis.

WrongDiagnosis? Or Lack Of One?

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: AnnaMariaQQss
  • March 12, 2011
  • 06:17 PM

I am always sick. I was diagnosed with SLE (Lupus) in 2002 shortly after my son was born. At first while undergoing testing for Lupus I was devastated. After many different Dr. visits and tests It became evident that for me, Lupus could be mantained by a healthier life style and eating habbits. I changed my diet to one a Lupus patient could benifit from. Within 3 months of my lifestyle changes my Lupus went into remission. I was feeling great and finally enjoying life again. I did however catch colds/viruses more often than most people and I ALWAYS have persistant pain that varies from day to day. The best way to describe the way it feels is that my body feels bruised all over. I may not be having an ache and when someone bumps into me or I beat myself up by running into things and such the pain is immediatly there. Sometimes the "bruised feeling" lasts for days even a week. When sleeping, I will awaken often with sever pain varying from time to time. If i have been laying on the sheets that become wrinkled and balled up throughout night I feel as if I've got a PRESSURE POINT sore where the most evident point is on hips/back. I have the same symptoms to neck/arms and legs as well. Alot of numbness & tingling and contastly have my legs and arms feel like they are going to sleep.
I learned to adapt to pain and deal with symptoms daily. It simply became a part of my life a I knew it. I was determined more than ever to enjoy my children and the simple things in life and to always be thankful for the life I was still able to have. I knew that other people were sicker and had many more things to overcome health wise than myself.
On Dec. 4,2009 I wad admitted through the E.R to the hospital. The reason I was told I was being admitted was that my blood test results indicated sever gallbladder & pancreas disease. I was admitted on the surgical floor.
They ran test after test along with 3 sets of abdominal x-rays, 3 MRI's, and 2 ultrasounds. FINDINGS: No gallstones, no enlargement of bile ducts. There was a 2.6 cm right ovarian cyst with multiple folicules on BOTH ovaries.Several air pockets found in abdominal area. Inflamation of the colon was apparent. Gas pockets were also noted in large.
After all this, the General surgeon at the hospital finally came to talk with me and give me the results of testing.This is where my hellish nightmare begin and STILL as of 3/11/2011 I have been in a FIGHT for my life.
Upper right quadrant pain and AWEFUL stomach pain along with MASSIVE swelling.
Burning pain in right side rib area that moves into back under shoulder blades and sometimes neck.
Having a full feeling even through I never eat alot. Eggs,dairy and peanuts make my symptoms and pain more sever and starts the stabbing-piercing pain that last sometimes for a day at a time.
When I lay down the pain some what eases as long as I stay on left side. Moving onto back or right side usually makes me vomite.
Running A 99-100 temp. is normal for me.
Pain NEVER goes away. Somedays I am able to control pain by applying heat and rest. And MOST days it stops me from functioning at all.
elevated ANA / high BP / elevated WBC (for last year) / large amounts of protein in urine with some blood sometimes / bilirubin in urine / crystals in urine / lack of BM for 2 to 3 days then diarrhea that lasts until I take a med to ease it / loud stomach noises (sounds like someone is burping in my belly) / the constant feeling as if I need to burp but can't / nausea after eating
Testing & Results (since Dec. 4,2009)
blood work
CA-125 = 11.5
Amylase = 67
Lipase = 292
Urine = Specific gravity of more than 1,030 with a ph of 6
Sodium = 134
Potassium = 4.2
Chloride = 99
BiCarb of 30
Glucose = 90
BUN of 5
Creatinine of 0.8
ALK Phos = 160
CBC = Hemoglobin of 13.8 / Hematocrit of 40.1
WBC = 8,500
Platelet Count = 284,000
Differenctial : Segs - 73 Lymphs - 24 Monos - 4 ( I have no clue what this means)
24 hr. Urine catch
Piperacillin/Tazobactam 16 S
Cefazolin >=64 R
Cefoxitin >=64 R
Ceftazidime <=1 S
Ceftriaxone <=1 S
Cefeppine < = 1 S
Ertapenen <=0.5 S
Imipenem<=1 S
Amikacin <=2 S
Grntamicin <=1 S
Tobramycin <=1 S
Ciprofloxacin <=0.25 S
Levofloxacin 0.5 S
Nitrofurantoin 128 R
Trimethoprim/Sulfamethox <=20 S
I've had every test you can imagen for the gall bladder and all the ultrasounds come back NORMAL. With the exception of the last 1,it showed that my common bile duct had a dialation of more than 16mm. That was actually detected in my last 2 CT scans w/iv contrast. Not one of my Drs. informed me of this before.
I truely feel as if I am getting sicker by the day. Everytime I got to Dr. they seem to find something else wrong. I've had a total abdominal wall hernia from all the operations (or maybe some unknown infection/disease) I am only 35, how common is it to herniate the entire abdomial wall? I went in for hernia repair surgery on 7/2010. My whole stomach was double line with Mess Netting. The Dr. told me that every place I had an internal stitch placed had herniated for a total of 4 different places. And still she did not think that this could explain my symptoms or all the upper right quadant pain.
That operation was single handedly the MOST painful thing I have even experianced in my life.I was cut open from top of pubic line to 2 inches above belly button and I had a 1.5 inch cut above the orginal cut for a plastic drain to be inserted to drain stomach of fluids and blood and to keep swelling & inflamation under control. It had a fist sized plastic ball attached that I had to wear for 6 days. It was emotionally upsetting and nasty!
Recovery for me is still underway physically. The pain still exists.
On Sat. 03/05/2011 I had another very painful experiance that knocked me on my **s again! I refused to go to E.R knowing that all they could was offer me drugs and maybe shake my hand good-bye. I have almost given up any and all hope of finding answers and explanations as to what is slowly sapping the life out of me.
Mon. 03/07/2011 I went to PCP with the pain once again. It was all I could do to walk to exam room. I went over symptoms with the Dr. and told him I thought perhaps I had another Ovarian cyst rupture. He ordered another STAT CT scan with contrast IV and told me to go straight to hospital and to NOT LEAVE until he called me and instructed me as to what to do.
Right ovarian follicules with 3 cysts.
There is persistant diastasis of the rectus abdominus muscles and persistent incisional hernia to incision cite.
Dilatation of the common bile duct (with no etiology observed) measuring up to 16 mm
I was sent back to the surgeon the very next day. I have no choice but to have the hernia repaired.It is so large that my intestine, stomach or appendix could slip through hernia and quickly become life threating or fatal. I can't believe it. I have cried for 2 days now. I know it doesnt help solve anything. I feel so totally devasted. I can't imagen having to go through the ***l of it all for the 2nd time. I didn't even get a full 6 months out of the previous hernia repair. There was only a 3-5% chance of re-rupture I was told.
So anyway, I am sitting on this in a very emotional way. Apart of me is feeling as if I need to RUN as fast as I can away and try my BEST TO FORGET. I don't want to give up, but I can't see where I have been helped or given a diagnosis but yet I am sicker than I ever have been.
Please, I am begging for anyone that has experianced some or ALL of these hellish medical condintions to please share your information with me. I either get educated about my medical isssues and try to figure this out myself OR SIT BACK LIKE I HAVE FOR LAST 18 MONTHS and cry when the pain is uncontrolled. Sometimes I wonder if this is what it feels like to "wait to die".
I have made the choice to fight back and hopefully, by the grace of God, find some much needed answers. Dare I even ask for a diagnosis?? I'LL TAKE A CHANCE AND DEMAND ONE, being patient hasn't been productive for me. Thanks for taking the time to read my article! Good luck and BETTER luck to everyone seeking out the "UNEXPLAINABLE" Anna

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