Interview with Charlie (creativeogre)

[~MaryO~]

This week's interview will be with Charlie (creativeogre) at 7:30PM eastern.

 

From Charlie's introductory post:

 

Here is my story.....

 

Approximately 18 months ago, I had 3 back to back sinus infections that did not respond well to antibiotics. A CT of my head was performed and he was found to have a bone spur in my sinus. One year ago, surgery was performed to remove the bone spur and, as a prophylactic measure, my tonsils and adenoids were removed as well. As you might imagine, recovery was slow. I was prescribed prednisone after the surgery and, after the initial discomfort from the surgery, felt better while on the prednisone.

 

Since then, I have had almost daily headaches, constant fatigue,muscle aches and has generally continued to be in poor health. I also developed depression around the time of my sinus surgery and which we attributed to not feeling well and having to close my business. My sleep has suffered as well, often sleeping only 3-4 hours at a time. While the snoring that he had prior to my nasal surgery had ceased, it began again approximately four months following the surgery. It was around that time that I also noticed my memory and concentration were poor.

 

In the past 12 months, I has seen an ENT, a cardiologist, a gastroenterologist, a dermatologist, a pulmonologist, a hematologist/oncologist, and an endocrinologist. And yet, we have no answer to my ill health.

 

I returned to the ENT approximately 6 months ago with a return of sinus congestion and pain and was told that everything ?looked OK.? No further tests were performed.

 

After a right bundle branch block was discovered by our internist on an EKG, I saw a cardiologist. A 24-hour urine test was performed. A treadmill stress test was attempted, but had to be stopped after three minutes due to a blood pressure of 240/130. A nuclear stress test was performed several weeks later and he was told everything ?looked OK,? but that it might be a good idea to have a sleep study performed.

 

During this time, I began to gain weight and my abdomen became large and distended. He did not gain weight on my arms or legs. Our internist ordered a CT of my abdomen. Several ?spots? (as they were referred to) were discovered on my liver and adrenal gland. I also had frequent and excessive diarrhea, nausea and diaphoresis with eating, which continues to this day. My intake has decreased, yet my abdomen continues to become more distended. I was then was referred to a gastroenterologist.

 

The gastroenterologist told me that he needed to cut down on my intake; essentially assuming that my abdomen was so large because of over eating. I got the distinct impression that he did not believe me when I told him that I's appetite was almost nonexistent. An colonoscopy and a endoscopy were performed. He was found to have an ulcer and Nexium was prescribed. He was told he'd ?be OK.? Unfortunately, it took five weeks for our insurance company to approve the Nexium. In the interim, he was prescribed Prilosec, then Protonix, neither of which were helpful in easing my symptoms. Even after I had been taking the Nexium for a while, he was still having diarrhea and nausea. Another endoscopy was performed and he was told that ?things look better? and he would ?be OK.?

 

Around the same time that he was having GI problems, lesions started to develop on my arms and hands. These would start with itching, proceed to fluid filled blisters within 2-3 hours and then very quickly finish with the top layer of skin sloughing off. These lesions take a long time to heal and when finally healed leave multiple discolorations on my arms and hands. I was sent to a dermatologist, who upon hearing the description of the lesions and even viewing several pictures we had taken of them, stated that he thought I had Sweet's Syndrome. However, he said that he could not definitively diagnose Sweet's Syndrome without a biopsy and a biopsy would not be accurate unless a new lesion was present. Since the lesions come and go so quickly, it was several weeks before a biopsy could be done due to the time of day or time of week the lesions appeared (the office is closed in the evenings and weekends). The first biopsy stated that the lesions were most likely secondary to a medications reaction. Neither the dermatologist, or I thought that this was accurate. Fortunately, our dermatologist did not give up and the second biopsy confirmed a diagnosis of Sweet's Syndrome. The primary treatment for Sweet's is prednisone, but the dermatologist did not want to prescribe that until he knew what was causing the Sweet's. However, he did feel that it would be wise for I to see a hematologist because Sweet's Syndrome is indicative of an internal disturbance, such as cancer.

 

I also saw a pulmonologist and a sleep study was ordered. The sleep study was performed and it was determined that he has obstructive sleep apnea. A C-Pap machine was prescribed. For several weeks he slept better, but he then again began to get up at least once during the night. My sleep pattern continues.

 

At this point, seeing that I was being past around to every ?oligist? in town as the hot potato, I decided it was time to start researching things myself.....

 

The next stop was the hematologist, who seemed as bewildered by events as we were. He was concerned by the amount of infections that I had had over the past year (3 sinus infections, pneumonia and several furuncles that had to be lanced professionally). Many tubes of blood later, it was determined that he did not have cancer and that he would ?be OK.? He also ordered a CT, which did show a adenoma on my adrenal gland....but did not mention it at the time (Note: Make sure you get copies of ALL tests, and notes)

 

No one had suggested that I see an endocrinologist. We finally had to suggest it to our internist and he agreed. However, because of miscommunication in our doctor's office the paperwork was never sent to the endocrinologist. It took two weeks for the paperwork to get to the endocrinologist's office. It took another four weeks for that paperwork to be reviewed and we were told that it might be several months for an appointment. After I became incredibly frustrated and spoke with the office manager, an appointment was made for the next week.

 

The appointment was quite lengthy and many questions were asked: had he gained weight? (yes); did he have stretch marks? (yes); did he have fatigue? (oh, yes); etc. More tests were ordered, including a glucose tolerance test, saliva tests and another 24-hour urine. Two weeks later he got a phone call from the doctor simply stating that it was determined that he has Type 2 diabetes. He was told to take my blood glucose readings four times a day and start Januvia. The doctor stated that he would set up an appointment with a dietitian, which never happened, and that he would ?be OK.?

 

Since then, I's blood glucose readings have ranged from 100 to 288. Several weeks ago, he had several consecutive days of feeling lightheaded, excessively fatigued and nauseous. my blood glucose levels were between 200 and 288 during that time. Four days in a row, he called the endocrinologist and asked for a return call. He never received a return call. On the 5th day, after a follow-up appointment with the pulmonologist, we stopped by the office of the endocrinologist, which is located in, and affiliated with, Strong Memorial Hospital. Not surprisingly, I was told that the doctor was busy and would call him.

 

Not being one to give up so easily, and more importantly, incredibly worried about my health, I walked back into the hospital and asked to be directed to the office of the Medical Director. He was not available, but we spoke to his assistant. She seemed concerned and told us that she would be in touch with the patient relations office. We waited a week and did not hear anything. I finally had to call and, after three phone calls over a two day period, we received a return phone call. We were asked what they could do to rectify the situation and I stated that an appointment with the endocrinologist would be appreciated. The endocrinologist called the next day and an appointment was scheduled for the following Monday (May 19th).

 

Again, I explained that not only were my symptoms continuing, but increasing in intensity as well. We have been doing exhaustive research and it is my belief that I could have Cushing's Syndrome. I mentioned this to the doctor and she ordered four more 24-hour urine tests. I is to follow-up with the nurse practitioner in 3 weeks. However, because she has been on vacation, we cannot even call to make an appointment until she gets back on May 27th.

 

Finally, yesterday, June 17, 2008, My Endo sat down with me and had the results for the 24 hour urine tests... High Cortisol on 3 of them, and borderline (right at the upper limit) on the 4th. I am now doing a high dose suppression test.

 

 

I understand that Cushing's Disease is a very difficult disease to diagnose. However, it seems as though we have had to guide doctors through this process over the past year. If I sound bitter and frustrated, it is because I am! I have not been able to work over the past year. Tasks that used to take me several hours to complete now take two days. I can no longer walk the dog. I do not sleep well at night and then I sleep during the day. I cannot concentrate and found I am becoming more depressed.

 

Through this all, I am very fortunate to have a very understanding, and supportive wife. She has been an angel, and my inspiration to push onward.

 

I have also contacted the NIH to see about their studies there. As things progress now, I have to wonder what surprises the medical community has in store next. My recommendation is to keep a daily log book of everything, phone calls, appointments, general feelings and health, Glucose levels (IF diagnosed suddenly as a type II diabetic) and any other information about your health. Don't be afraid to buck the system to get to see those you have to. Rattle a few cages and make things happen.

 

I am looking forward to getting my life back, and I can assure you, once all is said and done, I plan on living every day to it's fullest.

[kvb927]

Good job, Charlie and Jan!!!! It was great to hear your story. You're like a "dream team."

[creativeogre]

Once again, We would like to thank Mary,a nd all her helpers for allowing us the chance to be on the Blog talk radio show this evening.

 

I would like to encourage others to contact Mary O, and go on and tell your story. It is the fastest 40 Minutes you can Imagine, and had a good time doing it!

[~MaryO~]

What fun! Thanks Charlie, Jan, Robin and Katie for a fantastic chat

 

The archives are available now on BlogTalk Radio ( http://www.blogtalkradio.com/CushingsHelp ) and iTunes.

 

Thanks, everyone!

[staticnrg]

Charlie, per our discussion on the show tonight (which I thoroughly enjoyed!), here is some literature for you:

 

http://www.eje-online.org/cgi/reprint/153/6/803

 

http://home.comcast.net/~staticnrg/Cushing..._dex_mildCS.pdf

 

I have more, and my blog is full of info about testing and lab protocol. I'm trying to get all my info in one spot...

 

Oh...my del.icio.us site (see signature below) has links to much of my research stuff. Help yourself!

 

Hugs,

Robin