My Horror Story

May  I add .... unrelated to BC but definetely to your story... my son was born with imperforate anus (his opening was in the wrong place). For 1 1/2 years I saw a man surgeon at a world renown children's facility. Every month he would bring him in put him put him under general anesthesia and dilate his opening up. After 1 1/2 years he retired. This is where the hard to understand part comes in. He referred me to a colleage of  his who worked in his practice for the entire 1 1/2 years we saw him who did her post doctoral studies in children with  imperforate anus. The first time we saw her she said..."I don't need to examine your son... he needs surgery... a pull through... and if you aren't willing to do it than I advise you to go somewhere else because this is his cure." I fell on my knees and cried becuase my son had been in so much pain for 1 1/2 years going through needless dilations. This was her specialty and my suregoen would not refer me to her until he retired. Moral of the story? Many physicians have to much PRIDE to do the right thing. My surgeon knew little of my sons condition yet his partner was an expert in the field. I think because she was a female in a male dominated field he never once consulted with her. So absolutely.... get another opinion.

Thank you Dana for posting..I am in this boat..I have had problems with my left breast for 5 yrs..I was 29 at the time when I got my first mammo and u/s...Within the last few months that left breast has had discomfort and 2 lumps..I go back for a u/s then mammo..After my mammo they told me to come back later that day to do a u/s on the right..I thought it was "strange" because we were so focused on the left..I got a letter a few days later stating the left was fatty, tissue cyst but something was seen on the right..For me not to worry, they believe it's B9 and to get a mammo/us every 6 months..I didn't want to take any chances because this mass is "new", it was not in my previous mammo/us and is deep within the breast, cannot be felt by hand..I was suppose to see a surgeon last Monday but was bumped to this coming up Monday..I will not take "we believe it's B9" for an answer..

I so know how ya'll feel; that doctors can make mistakes and misdiagnose you or put you off.  This has happened to me three times in the past couple of years.   After I went through my mastectomy, chemo and started Tamoxifen, my GI health started to decline.  I've had a long history of diverticulosis, so when I started having problems, my doctor told me I had diverticulitis and put me on flagyl,then sent me to a general surgeon who did a workup.  They found out my gall bladder was non functioning, so I had it removed, and during the process of this workup they told me I had a mass on my left adrenal gland but it was probably benign.  The surgeon referred me to my oncologist, who in turn, referred me to an endocrinologist to have the mass checked.  The endo dr told me that I probably had a disease called Primary Aldosteronism and that it is benign but scheduled a ct scan of the mass to be sure.  Then he sent me for a bunch of endo blood work and then would remove the left adrenal gland mass once all the blood tests came back to confirm it.

All during this time, the gall bladder surgery did not clear up my gi symptoms. I kept having fever, diarrhea, frequent nausea/vomitng and lower left flank and lower left abdominal pain.  My regular doctor referred me to a Gi specialist but I couldn't get into the office for an appointment in a timely manner.  They're closest appointment was a month off.  So my regular physician kept putting me on flagyl which would clear up the symptoms until I completed the course of the prescriptions. All my symptoms would return about a week later.  The happened over and over, so my regular physician admitted me to the hospital for 1 week.  I went thru tests and a colonscopy with this new Gi Doctor, and they could only find chronic diverticulosis with no active infection.  So I had no answers when they discharged me.  I was instructed to see the Gi Doctor after discharge, but when I went, he didn't really listen that my symptoms were no better. He rushed in and out.  I became sick again and called them.  They couldn't get me in until the next week but ordered a barium enema & gave me the prep instructions of nothing to eat or drink after midnight the night before the test.  I was so weak and sick but I managed to drive myself to the hospital for the test but I couldn't make it from my car, so the hospital wheelchaired me to radiology for the test.  Radiology told me I was too sick to have the test done, and that the dr's office gave me the wrong prep instructions. I was not supposed to be npo after midnight. It was supposed to be clear liquids. They wheeled me to the Emergency Rooma and I was admitted to the telemitry unit due to being so dehydrated and such a low potassium level, they were worried my heart would stop.  The Gi Doctor on call saw me cuz my regular Gi Doctor wasn't on call.  This other doctor is the same practice called me in my room and asked if I minded having another colonoscopy before they did any prep and I said yes. They came and got me and the Gi Doctor's partner was able to diagnose me with C Diff infection.  This nearly killed me.  I fired my Gi Doctor and got another one after I told the office I wanted to stay with the one that was able to diagnose me. They gave me a hard time about it so I cancelled my appointment with them and told them I would not be back. My regular doctor referred me to another gi doctor in the next town, who I've been happy with.  He told me that I've probably had the c diff for several months and they use flagyl to treat it, so whenever I was on flagyl, it would kill most of it, but not all of it, cuz the dosage wasn't long enough.  It would grown right back. I couldn't believe the negligence of the other Gi Doctor.

And to make matters worse, the endocrinologist's office called me to tell me that I didn't have Primary Aldosteronism and dropped me as a patient.  I took my blood work to another Endocrinologist who specializes in this rare disorder, gave him a copy of my records and he stated that I DO have Primary Aldosteronism. He said as long as I stay on a medication called Spironolactone, it can control those symtoms (high blood pressure, leg edema) 

I'm so sorry this has been so long, but I've been so frustrated for the past couple of years with all the no answers to why my health was failing. It affected my home life, my work, everything. I'd work one week, then too sick to go in the next. Plus my work didn't want me there cuz C Diff can be contagious to people with a suppressed immune system or people on antibiotics. Since we do surgeries at work and alot of our patient's are on antibiotics, I couldn't work.

Anyways, it just helps to know that I'm not alone, and I wish ya'll all the best.

Take care,

Deb

Isn't this awful, in our day and age of medical technology, to become gravelly ill and not be taken seriously by our doctors? and almost die from a bacterial infection.  I am so glad that your son finally got the treatment and diagnosis.   The GI Doctor who was so negligent in my C Diff case is Dr. Adams in Gulfport, Ms.  I, too, did not opt to sue.  I was just happy to finally have a diagnosis.  One thing I wanted to ask:  Did your son become lactose intolerant after his c diff?  I was consistantly having problems after the c diff was killed with diarrhea and stomach issues, nausea, vomting. The new Gi Doc I've been seeing figured out right away that the cdiff destroyed the cells that break down lactose because they are located on the outer lining of the digestive tract.  I had the test done and it was positive, so now I do very well as long as I don't eat anything with lactose.  

As for the doctor that misdiagnosed the primary aldosteronism, I really don't have too much hard feelings for him for the misdiagnosis, but the way the office dropped me made me angry.  I happened to already be on spironolactone due to my primary physician because it was the only diaruetic medicine that kept my legs from retaining fluid. I'd swell up to my knees.  For one of the diagnostic tests, I had to be off of it for 6 weeks and I began having severe fluid buildup in my legs again. I kept calling the office complaining about my legs and that my blood pressure was high, but they kept telling me to hang on, that I couldn't go back on the medicine til after the last test.  When I called to get my results after I'd had the test done, to get back on spironolactone, this was when they told me that I didn't have it, due to the results of that last test,  and dropped me as a patient.  I told them I needed the spironolactone again and that my blood pressure so high and I that my legs were so swollen and they told me that it was now my medical doctor's problem.  I couldn't believe it. I called my primary care, explained what was going on and they got me in right away. My blood pressure was 170 over 90 something.  They put me back on the spironolactone and all my symptoms cleared right up.  He's going to keep me on the medication for life.   The specialist who finally diagnosed the adrenal gland problem told me that the condition is relatively new and not widely understood yet.  They call it Conn's Disease and he used to work with the Dr. Conn who the condition is named after.  Since he lives clear across the country, he told me that as long as I stay on the medication, that it will control it.  I just happened to be on the drug that they treat it with already, my primary doctor had just stumbled upon it after we had tried, maxide, prinzide and other duieretics. Apparently, when the endo doctors are in medical school, this condition is touched upon breifly and told you might see one or two patients in your whole lifetime practice.  So they are not that educated on it.  The test I had done was supposed to measure the range between my renin level and my aldosterone level.  The test showed my aldosterone level was within normal limits, so he thought I didn't have it.   But what I learned from the new doctor, My renin was at the lowest normal figure and my aldosterone was at the highest level within normal limits.  The ratio was like 32 points.  THAT's what the disease is.  Not the fact that my aldosterone level was not elevated beyone normal limits. 

I shake my head at this but I can see if the local endo doctor wasn't educated properly in med school, than he wouldn't have known what to look for. He knew about the condition, cuz he suspected it, but he didn't know enough about it. I'm just blessed I stumbled upon this specialist online. They have a site that is trying to get more public understanding on the condition so hopefully in the future, this won't happen. 

I opted not to persue surgery to have my adrenal gland removed because this specialist told me that the condition could be caused from the mass and if they remove it I wouldn't have high blood pressure or leg swelling anymore. But it also could be caused from the glands themselves and I was born with it. if that was the case, my symptoms would not go away if I have one removed and not the other. Since you can't survive with no adrenal glands, I opted to just stay on the medication.

IT's been so nice to meet someone who has been going through alot of the same issues with the C diff.  I hope your son never gets it again. They tell me that the spores stay in your body and cannot be destroyed, but normally, if a few hatch, they become a normal part of your digestive flora.

Take care,

deb

I can only go where my insurance sends me and that is not always the best of the best!! I could not afford an expensive insurance. So tired of hearing that I should go to the best or second opinion. Everybody told me to go to one doctor, in my small town. And we do not have the new 3 D mammogram machine. But I had a mammo every year but had dense breasts so harder to detect. I was told my last mammo that I passed and then a few months later felt a lump in the shower. And not in the breast they were following and put a clip in!!